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Your CPMS 2.0 journey: new ERN-EuroBloodNet Dissemination Pill on 3 December

Your CPMS 2.0 journey: new ERN-EuroBloodNet Dissemination Pill on 3 December

2026-11-10

Register now for the next ERN-EuroBloodNet Dissemination Pill, Your CPMS...

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ERN-EuroBloodNet registry showcased at the ERDERA General Assembly Meeting

ERN-EuroBloodNet registry showcased at the ERDERA General Assembly Meeting

2026-11-09

Dr María del Mar Mañú Pereira, Co-Coordinator of ERN-EuroBloodNet, presented...

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ERN-EuroBloodNet in Padua: two days of collaboration on networks and data

ERN-EuroBloodNet in Padua: two days of collaboration on networks and data

2026-11-04

Co-Coordinator Dr María del Mar Mañú Pereira met representatives of...

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ERN-EuroBloodNet and RADeep put mental health at the centre of the Patient Sessions at ASCAT 2026

ERN-EuroBloodNet and RADeep put mental health at the centre of the Patient Sessions at ASCAT 2026

2026-11-02

For the eighth consecutive year, ERN-EuroBloodNet, together with RADeep, coordinated...

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Save the Date – EURORDIS Black Pearl Awards 2027

Save the Date – EURORDIS Black Pearl Awards 2027

2026-10-29

The EURORDIS Black Pearl Awards 2027 will take place on...

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RiseMPN 2026 – Can we engineer disease trajectories in MPNs?

RiseMPN 2026 – Can we engineer disease trajectories in MPNs?

2026-10-28

The event will take place on 6-7 November 2026 at...

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New publication in The Lancet Haematology: "Integrating sexual health into sickle cell disease care

New publication in The Lancet Haematology: "Integrating sexual health into sickle cell disease care

2026-10-26

Born from the ERN-EuroBloodNet and RADeep Patients’ Sessions at ASCAT...

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Registrations for the 2026 HLM4Rare High-Level Meeting are now open, and the draft program is available!

Registrations for the 2026 HLM4Rare High-Level Meeting are now open, and the draft program is available!

2026-10-21

Register now for the High-Level Meeting in Brussels on 1-3...

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Meet the ERN-EuroBloodNet and RADeep Network team at ASCAT 2026!

Meet the ERN-EuroBloodNet and RADeep Network team at ASCAT 2026!

2026-10-05

Find us at Stand 3 in the Exhibition Hall and...

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Dr Maria del Mar Mañú Pereira participated at the European Health Forum Gastein 2026

Dr Maria del Mar Mañú Pereira participated at the European Health Forum Gastein 2026

2026-10-02

ERN-EuroBloodNet Co-Coordinator and Chair representing the 24 European Reference Networks,...

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Register now for the 8th ERN-EuroBloodNet Progress Meeting!

Register now for the 8th ERN-EuroBloodNet Progress Meeting!

2026-10-02

The meeting will be held online on 12 November at...

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Last weeks to apply for the EURORDIS Open Academy x ERDERA Schools 2027!

Last weeks to apply for the EURORDIS Open Academy x ERDERA Schools 2027!

2026-10-01

Applications are open until 16th October

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For our Spanish-speaking community! Save the date for the “Jornada de Avances en Oncohematología Pediátrica 2026”

For our Spanish-speaking community! Save the date for the “Jornada de Avances en Oncohematología Pediátrica 2026”

2026-08-31

Online conference taking place on 04, 11, 18 and 25...

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New Cross-ERN publication! "Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks"

New Cross-ERN publication! "Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks"

2026-08-31

European Reference Networks share lessons learned and recommendations to strengthen...

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ERN-EuroBloodNet contributes to discussions on data quality and real-world evidence at SSIEM 2026

ERN-EuroBloodNet contributes to discussions on data quality and real-world evidence at SSIEM 2026

2026-08-28

Dr María del Mar Mañú Pereira, Scientific Coordinator of the...

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ERN-EuroBloodNet contributes to the ImmuneT-ME consortium

ERN-EuroBloodNet contributes to the ImmuneT-ME consortium

2026-08-05

ERN EuroBloodNet is a partner in the ImmuneT-ME consortium, a...

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Save the Date: Focus on Pediatric Oncology and Hematology 2026 – Latest Scientific Advances

Save the Date: Focus on Pediatric Oncology and Hematology 2026 – Latest Scientific Advances

2026-07-28

Italian-speaking healthcare professionals are invited to save the date for...

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What are European Reference Networks (ERNs)?

What are European Reference Networks (ERNs)?

2026-07-28

New material available: Two factsheets on European Reference Networks (ERNs)...

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Join the IRDiRC Diagnostics Scientific Committee (DSC)

Join the IRDiRC Diagnostics Scientific Committee (DSC)

2026-07-27

Interested candidates are invited to send their resume, biosketch, and...

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Castleman Disease Awareness Day: Promoting understanding of a rare and complex disease

Castleman Disease Awareness Day: Promoting understanding of a rare and complex disease

2026-07-23

Raise your hand. Start the conversation. Today, on Castleman Disease...

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1º Simpósio Português de Doença Falciforme e Talassemia

1º Simpósio Português de Doença Falciforme e Talassemia

2026-07-21

For our Portuguese-speaking community: a national symposium dedicated to sickle...

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Get ready for ASCAT 2026!

Get ready for ASCAT 2026!

2026-07-15

The Academy for Sickle Cell and Thalassemia (ASCAT) will take...

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Poster submissions are now open for the World Orphan Drug Congress Europe 2026!

Poster submissions are now open for the World Orphan Drug Congress Europe 2026!

2026-07-09

Submit your poster application by 28 September 2026 and showcase...

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ERDERA launches Clinical Trial Call 2026 to advance early‑phase clinical trials for rare diseases

ERDERA launches Clinical Trial Call 2026 to advance early‑phase clinical trials for rare diseases

2026-07-03

Applications open until 10 September 2026

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Highlights of the Health without Postcodes event at the European Parliament

Highlights of the Health without Postcodes event at the European Parliament

2026-07-03

ERN-EuroBloodNet was represented by our Scientific Coordinator, Dr María del Mar...

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ERN-EuroBloodNet results from the Eurordis Rare Barometer survey on the mental health of people with rare diseases

ERN-EuroBloodNet results from the Eurordis Rare Barometer survey on the mental health of people with rare diseases

2026-06-29

Insights from 87 participants from ERN-EuroBloodNet representing 27 rare hematological...

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World Sickle Cell Disease Day 2026: Turning patient voices into awareness and education

World Sickle Cell Disease Day 2026: Turning patient voices into awareness and education

2026-06-19

ERN-EuroBloodNet, in collaboration with the RADeep network, has developed a...

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Launch of Rare Barometer survey results: The mental health of people living with a rare or undiagnosed condition and their family members

Launch of Rare Barometer survey results: The mental health of people living with a rare or undiagnosed condition and their family members

2026-06-08

The latest insights from the EURORDIS Rare Barometer survey be...

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One week to go: Meet ERN-EuroBloodNet at EHA 2026!

One week to go: Meet ERN-EuroBloodNet at EHA 2026!

2026-06-02

Next week, ERN-EuroBloodNet will once again participate in the European...

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Register now for the World Orphan Drug Congress Europe 2026!

Register now for the World Orphan Drug Congress Europe 2026!

2026-05-28

The World Orphan Drug Congress Europe will take place 26-28...

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2026 call for applications: Affiliated Partner within the European Reference Networks

2026 call for applications: Affiliated Partner within the European Reference Networks

2026-05-20

The European Commission has launched the 2026 Call for Affiliated...

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The 13th European Conference on Rare Diseases and Orphan Products will be held on 3 & 4 June 2026

The 13th European Conference on Rare Diseases and Orphan Products will be held on 3 & 4 June 2026

2026-05-20

Dr María del Mar Mañú Pereira, Scientific Coordinatior of the...

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CALL FOR PARTICIPANTS - The ERN-EuroBloodNet is inviting you to participate in Medical Education Onsite Program

CALL FOR PARTICIPANTS - The ERN-EuroBloodNet is inviting you to participate in Medical Education Onsite Program

2026-05-19

Learn about Acquired and Inherited Aplastic Anemia in Patients of All...

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The Health Leadership Mission for Rare Diseases is now live on website and social media channels!

The Health Leadership Mission for Rare Diseases is now live on website and social media channels!

2026-05-18

HLM Rare evolves into Health Leadership Mission for Rare Diseases...

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“Rare Diseases: Placing Patients at the Centre of a European Framework”, marked a key step towards an EU Action Plan for Rare Diseases.

“Rare Diseases: Placing Patients at the Centre of a European Framework”, marked a key step towards an EU Action Plan for Rare Diseases.

2026-05-17

The event was hosted at the European Parliament, and co-organised...

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Draft Report with recommendations to the Commission on a European Union rare disease action plan

Draft Report with recommendations to the Commission on a European Union rare disease action plan

2026-04-14

The European Parliament sets priorities for a more coordinated EU...

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EU rare disease action plan: Main findings from the European Added Value Assessment

EU rare disease action plan: Main findings from the European Added Value Assessment

2026-04-12

New European Parliament study maps options for an EU rare...

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Op-ed: The EU needs a 28th Regime for life sciences

Op-ed: The EU needs a 28th Regime for life sciences

2026-04-12

The op-ed co-authored by MEP Vytenis Andriukaitis, Maurizio Scarpa and...

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NEXT Generation Diagnosis in Leukemia 5ª Edition

NEXT Generation Diagnosis in Leukemia 5ª Edition

2026-03-31

Virtual training organized by SEHH and the Josep Carreras Leukaemia...

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New educational program on Artificial Intelligence and its applications in hematology!

New educational program on Artificial Intelligence and its applications in hematology!

2026-03-30

Registration now open for the program starting this May

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Undiagnosed Day 2026 | Where diagnosis becomes hope: The power of collaboration and technology in rare diseases

Undiagnosed Day 2026 | Where diagnosis becomes hope: The power of collaboration and technology in rare diseases

2026-03-30

Organised by ERDERA, this international event will bring together experts...

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New publication! "Action taken upon the detection of sickle cell trait (heterozygous hemoglobinopathy S) in newborn screening in Spain"

New publication! "Action taken upon the detection of sickle cell trait (heterozygous hemoglobinopathy S) in newborn screening in Spain"

2026-03-29

Study co-authored by María del Mar Mañú Pereira was published...

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New call open: AI ‘Screening’ Centers & Call for Expression of Interest

New call open: AI ‘Screening’ Centers & Call for Expression of Interest

2026-03-25

Join the European Network of AI-Powered Advanced Screening Centres until...

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ASCAT 2026: Call for Abstracts is now open!

ASCAT 2026: Call for Abstracts is now open!

2026-03-05

Submit your abstract before 11 May 2026 for the 21st...

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High-Level Conference on Patients’ Rights and the European Reference Network in the European Union

High-Level Conference on Patients’ Rights and the European Reference Network in the European Union

2026-03-02

The event will be held hybrid on 26 March 2026,...

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New EU Communication materials highlight the role of European Reference Networks (ERNs)

New EU Communication materials highlight the role of European Reference Networks (ERNs)

2026-02-28

DG SANTE releases updated brochures, factsheets and publications showcasing the...

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Rare Disease Day 2026: Yunu's story

Rare Disease Day 2026: Yunu's story

2026-02-28

At the age of 12, Yunus was diagnosed with Chronic...

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Rare Disease Day 2026: United for the 300 million people living with a rare disease

Rare Disease Day 2026: United for the 300 million people living with a rare disease

2026-02-27

ERN-EuroBloodNet joins the global movement and highlights the role of...

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Save the date & register now for the ERN-EuroBloodNet meeting at EHA 2026!

Save the date & register now for the ERN-EuroBloodNet meeting at EHA 2026!

2026-02-26

The Board of the Network Meeting will take place on...

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SimFalTa Symposium 2026 to advance comprehensive care in Sickle Cell Disease and Thalassemia

SimFalTa Symposium 2026 to advance comprehensive care in Sickle Cell Disease and Thalassemia

2026-02-25

On 25 March 2026 in Madrid, experts will discuss advances...

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The 12th Symposium "HEMATOLOGY TODAY" will take place from 23 to 25 April 2026, in Ulm!

The 12th Symposium "HEMATOLOGY TODAY" will take place from 23 to 25 April 2026, in Ulm!

2026-02-23

The meeting brings together experts to discuss innovations in non-malignant...

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ERN-EuroBloodNet team was present at the RealiseD General Assembly Meeting 2026

ERN-EuroBloodNet team was present at the RealiseD General Assembly Meeting 2026

2026-01-30

The meeting was hosted by Teamit at the Recinto Modernista...

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The ERDERA 2026 joint Transnational Call “Resolving unsolved cases in rare genetic and non‑genetic diseases” is open!

The ERDERA 2026 joint Transnational Call “Resolving unsolved cases in rare genetic and non‑genetic diseases” is open!

2026-01-28

The deadline to submit pre-proposals is 12 February 2026

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IRDiRC has recently launched a global call for experts

IRDiRC has recently launched a global call for experts

2026-01-27

Submit by 20 February 2026 to join the dedicated Task...

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European Reference Networks (ERNs) are building Europe’s Rare Disease Ecosystem: 3 days of debate, 8 priorities, one shared Declaration, 30 million people living with a rare disease in Europe.

European Reference Networks (ERNs) are building Europe’s Rare Disease Ecosystem: 3 days of debate, 8 priorities, one shared Declaration, 30 million people living with a rare disease in Europe.

2026-01-26

The High-Level Meeting (HLM) on a European research and innovation...

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Transition in Rare Diseases Workshop, 27-28 February 2026, Ghent, Belgium

Transition in Rare Diseases Workshop, 27-28 February 2026, Ghent, Belgium

2026-01-16

This workshop will convene experts, patients, and stakeholders from across...

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Open Academy x ERDERA Schools "Navigating rare disease research: data, ethics, and AI in Europe"

Open Academy x ERDERA Schools "Navigating rare disease research: data, ethics, and AI in Europe"

2026-01-15

The online part of the training will run from March...

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New survey launched to improve rare diseases clinical trial enrolment

New survey launched to improve rare diseases clinical trial enrolment

2026-01-14

A new multi-stakeholder survey, launched by the RealiseD project, invites...

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$STREAM: A European real-world data platform for Relapsed/Refractory Acute Myeloid Leukemia$

STREAM: A European real-world data platform for Relapsed/Refractory Acute Myeloid Leukemia

2026-01-12

Funded by Horizon Europe, the IMPACT-AML project is developing STREAM,...

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New webinar program! EHC-ERN-EuroBloodNet Topic on Focus: Ageing well with rare bleeding disorders

New webinar program! EHC-ERN-EuroBloodNet Topic on Focus: Ageing well with rare bleeding disorders

2026-01-02

This new Topic on Focus webinar series, Ageing Well with...

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Follow us on social media to stay up to date with the latest rare hematology news!

Follow us on social media to stay up to date with the latest rare hematology news!

2025-12-31

ERN-EuroBloodNet is now in Bluesky too, follow us!

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ERN-EuroBloodNet voices on Rare Hematological Diseases at EHA Unplugged podcast!

ERN-EuroBloodNet voices on Rare Hematological Diseases at EHA Unplugged podcast!

2025-12-30

María del Mar Mañú and Béatrice Gulbis joined the European...

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New Publication: "HELIOS Action: Advancing research, education, and equity in hemoglobinopathies across Europe and beyond"

New Publication: "HELIOS Action: Advancing research, education, and equity in hemoglobinopathies across Europe and beyond"

2025-12-29

The article was recently published in HemaSphere, the official open-access...

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Happy holiday season & best wishes for 2026!

Happy holiday season & best wishes for 2026!

2025-12-22

May the peace and joy of the holidays be with...

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Register now for ECRD 2026!

Register now for ECRD 2026!

2025-12-18

The next ECRD will be held on 3 & 4 June...

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Joint-ERN webinar for Ukrainian clinicians "Improving Rare Disease Care in Ukraine: Access to ERNs and expert resources"

Joint-ERN webinar for Ukrainian clinicians "Improving Rare Disease Care in Ukraine: Access to ERNs and expert resources"

2025-12-15

The ERN eUROGEN and Endo-ERN are jointly hosting a webinar...

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EHA-SWG Scientific Meeting: Abstract submission is open until December 21, 2025!

EHA-SWG Scientific Meeting: Abstract submission is open until December 21, 2025!

2025-12-12

The meeting will cover the latest updates in congenital and...

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Great insights from ERN-EuroBloodNet’s participation at ASH 2025!

Great insights from ERN-EuroBloodNet’s participation at ASH 2025!

2025-12-12

Discover the key highlights and contributions of the ERN-EuroBloodNet team...

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RealiseD Webinars: Driving Innovation in Rare Disease Clinical Trials

RealiseD Webinars: Driving Innovation in Rare Disease Clinical Trials

2025-12-09

The RealiseD project will host a series of four-part webinars...

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Discover the highlights from the ERN-EuroBloodNet 7th Progress Meeting!

Discover the highlights from the ERN-EuroBloodNet 7th Progress Meeting!

2025-11-27

The online meeting of 6 November 2025 brought together the...

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Mar Mañú Pereira presented “Towards ethical AI in Rare Diseases: data quality and clinical validation for real equity” at the XXXI National Congress on Health Law in Madrid, Spain.

Mar Mañú Pereira presented “Towards ethical AI in Rare Diseases: data quality and clinical validation for real equity” at the XXXI National Congress on Health Law in Madrid, Spain.

2025-11-27

It is a key forum addressing one of today’s major...

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European Reference Networks - Monitoring report 2025

European Reference Networks - Monitoring report 2025

2025-11-20

European Commission releases the first public monitoring report on ERN...

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ASH Abstracts are now available!

ASH Abstracts are now available!

2025-11-12

The 67th ASH Annual Meeting and Exposition will take place...

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ERDERA pre announces 2026 Call for Proposals on resolving unsolved rare diseases through variant validation and new technologies

ERDERA pre announces 2026 Call for Proposals on resolving unsolved rare diseases through variant validation and new technologies

2025-11-12

The 2026 Joint Transnational Call will be launched on 10...

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2nd International Conference on Clinical Research Networks (CRN) for Rare Diseases

2nd International Conference on Clinical Research Networks (CRN) for Rare Diseases

2025-11-11

The 2nd International Conference on Clinical Research Networks for Rare...

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Save the date! High-Level Meeting on Rare Diseases Research and Innovation in Europe, 9–11 December 2025

Save the date! High-Level Meeting on Rare Diseases Research and Innovation in Europe, 9–11 December 2025

2025-10-30

Register now for in-person or remote attendance

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Get ready for RiseMPN 2025, live in Rome, November 7–8!

Get ready for RiseMPN 2025, live in Rome, November 7–8!

2025-10-26

RiseMPN 2025 marks a turning point in the evolving landscape...

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Bridging the gap: presenting the Sickle Cell Transition Charter at the European Parliament

Bridging the gap: presenting the Sickle Cell Transition Charter at the European Parliament

2025-10-23

Mariangela Pellegrini, representing ERN-EuroBloodNet, presented the Charter for Optimal Transitions...

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Poster abstract submissions for ECRD 2026 are now open!

Poster abstract submissions for ECRD 2026 are now open!

2025-10-22

Submit your abstract before 6th March

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ERN-EuroBloodNet 7th Progress Meeting will be held the 6th November 2025 online, register now!

ERN-EuroBloodNet 7th Progress Meeting will be held the 6th November 2025 online, register now!

2025-10-20

Block your agenda to attend the ERN-EuroBloodNet's event of every...

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ERN-EuroBloodNet strengthens patient-centred focus at ASCAT 2025!

ERN-EuroBloodNet strengthens patient-centred focus at ASCAT 2025!

2025-10-20

For the seventh consecutive year the ERN-EuroBloodNet coordinated special sessions...

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Productive and inspiring 3-Day Meeting of the ERN-EuroBloodNet team in Barcelona

Productive and inspiring 3-Day Meeting of the ERN-EuroBloodNet team in Barcelona

2025-10-16

The team gathered at Vall d’Hebron Institute of Research (VHIR)...

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Sant Joan de Déu launches new Pediatric Hematology Training on 20 February 2026!

Sant Joan de Déu launches new Pediatric Hematology Training on 20 February 2026!

2025-10-15

On 20 February 2026, healthcare professionals are invited to a...

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Spotlight on Excellence: Thursdays Webinars Welcomes ERN Coordinator Prof. Fenaux!

Spotlight on Excellence: Thursdays Webinars Welcomes ERN Coordinator Prof. Fenaux!

2025-09-30

ERN-EuroBloodNet is delighted to announce the participation of its Coordinator,...

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Call for Applications: 2026 EURORDIS Open Academy Schools

Call for Applications: 2026 EURORDIS Open Academy Schools

2025-09-28

Don't miss this opportunity! Get involved in advancing the future...

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Survey launched on what helps people live with a rare or undiagnosed condition

Survey launched on what helps people live with a rare or undiagnosed condition

2025-09-28

This survey is an initiative of EURORDIS-Rare Diseases Europe

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Grupos de conversación online para personas con Anemia Falciforme by ASAFE

Grupos de conversación online para personas con Anemia Falciforme by ASAFE

2025-09-23

For our Spanish community: La Asociación Española de Enfermedad Falciforme (ASAFE)...

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The JARDIN General Assembly will be held in Vilnius, Lithuania, on 7–10 October 2025.

The JARDIN General Assembly will be held in Vilnius, Lithuania, on 7–10 October 2025.

2025-09-21

The General Assembly will offer a shared space for strategic...

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ERDERA's Open Session is now published and open to the public for registrations!

ERDERA's Open Session is now published and open to the public for registrations!

2025-09-18

Join ERDERA’s Open Session on 30 October and be inspired...

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ERN-EuroBloodNet Thursdays Webinars series now accredited by EBAH!

ERN-EuroBloodNet Thursdays Webinars series now accredited by EBAH!

2025-08-29

Thursdays Webinars series has officially received accreditation from the European Board for...

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New ERN-EuroBloodNet webinar series on Inherited Platelet Function Disorders!

New ERN-EuroBloodNet webinar series on Inherited Platelet Function Disorders!

2025-08-29

This program is launched in collaboration with French Reference Networks...

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Save the date! "Jornada de avances en Oncohematología Pediátrica 2025"

Save the date! "Jornada de avances en Oncohematología Pediátrica 2025"

2025-08-28

On 5, 12, 19 and 26 November, the Conference on...

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ERN-EuroBloodNet is officially supporting partner of the World Orphan Drug Congress Europe!

ERN-EuroBloodNet is officially supporting partner of the World Orphan Drug Congress Europe!

2025-08-26

Save the date! This is the largest and most established...

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Now available on YouTube! EHA & ERN-EuroBloodNet Spotlight Congenital Bone Marrow Failure Syndromes.

Now available on YouTube! EHA & ERN-EuroBloodNet Spotlight Congenital Bone Marrow Failure Syndromes.

2025-08-25

Missed the live sessions? Watch them anytime on YouTube!

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Rare Coagulation Disorders Under the Microscope: Insights from the ISLH–ERN EuroBloodNet Topic on Focus Webinar Program

Rare Coagulation Disorders Under the Microscope: Insights from the ISLH–ERN EuroBloodNet Topic on Focus Webinar Program

2025-07-31

ISLH-ERN EuroBloodNet Topic on Focus on Rare Coagulation Disorders Webinar...

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Outcomes of the successful working days at the EHA 2025 Congress!

Outcomes of the successful working days at the EHA 2025 Congress!

2025-07-28

Discover more about the ERN-EuroBloodNet experience at the congress in...

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New webinar program! EDITSCD & ERN-EuroBloodNet: Explaining Genetic Therapy for People living with Sickle Cell Disease

New webinar program! EDITSCD & ERN-EuroBloodNet: Explaining Genetic Therapy for People living with Sickle Cell Disease

2025-07-22

The program starts on the 26th of September registration is...

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Save the date for the EHA2026 Congress!

Save the date for the EHA2026 Congress!

2025-07-08

Let's meet at EHA 2026, which is taking place from...

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New survey! Expectations/requirements for a potential gene editing for Pyruvate Kinase Deficiency (PKD) and Congenital Dyserythropoietic Anemia (CDA)

New survey! Expectations/requirements for a potential gene editing for Pyruvate Kinase Deficiency (PKD) and Congenital Dyserythropoietic Anemia (CDA)

2025-06-30

This survey is designed to gather insights into patients' expectations...

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New webinar program! Topic on Focus: EU Health Policy for patients organizations

New webinar program! Topic on Focus: EU Health Policy for patients organizations

2025-06-30

The webinar program is co-led by ERN-EuroBloodNet & FITHAD and...

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Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs)

Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs)

2025-06-29

Are you involved in the care of patients with rare...

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The Clinical Patient Management System 2.0 (CPMS) mobile apps are now available!

The Clinical Patient Management System 2.0 (CPMS) mobile apps are now available!

2025-06-26

CPMS 2.0 mobile applications are now live and available to...

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Charter for Optimal Transitions from Paediatric to Adult Care in Sickle Cell Disease.

Charter for Optimal Transitions from Paediatric to Adult Care in Sickle Cell Disease.

2025-06-24

The Charter for Optimal Transitions from Paediatric to Adult Care...

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June 19th is World Sickle Cell Day, and to mark the occasion, ERN-EuroBloodNet & RADeep Network are proud to launch a 2-minute animated video!

June 19th is World Sickle Cell Day, and to mark the occasion, ERN-EuroBloodNet & RADeep Network are proud to launch a 2-minute animated video!

2025-06-19

This video tells their story. It was shaped in the...

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Save the Date! Launch the Charter for optimal care transitions in sickle cell disease.

Save the Date! Launch the Charter for optimal care transitions in sickle cell disease.

2025-05-30

The launch of the Charter for Optimal Transitions from Paediatric...

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Check out where the ERN-EuroBloodNet booth will be at the EHA 2025 and the activities on the agenda!

Check out where the ERN-EuroBloodNet booth will be at the EHA 2025 and the activities on the agenda!

2025-05-28

The EHA Congress is the biggest event on hematology in...

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Exciting news of the Seventy-eighth World Health Assembly (WHA78)!

Exciting news of the Seventy-eighth World Health Assembly (WHA78)!

2025-05-28

WHO elevates Rare Diseases to global health priority status with...

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The ERN-EuroBloodNet participated in the 22nd ERN Coordinators meeting & the meeting with the Board of Member States.

The ERN-EuroBloodNet participated in the 22nd ERN Coordinators meeting & the meeting with the Board of Member States.

2025-05-26

These two events were key in shaping the future of...

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European survey on "Artificial Intelligence in Haematology: Knowledge and Perspectives" Contribute before 1st June!

European survey on "Artificial Intelligence in Haematology: Knowledge and Perspectives" Contribute before 1st June!

2025-04-23

Your valuable input will contribute to shaping the future of...

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ERN-EuroBloodNet Board of Network Meeting at the EHA 2025 in Milan

ERN-EuroBloodNet Board of Network Meeting at the EHA 2025 in Milan

2025-04-22

The BoN meeting will be held on Friday 13th June

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Have you already submitted your abstract for ASCAT 2025?

Have you already submitted your abstract for ASCAT 2025?

2025-04-22

The call for abstracts is open until 9 June!

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New publication: COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet

New publication: COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet

2025-04-17

The article was recently published in the Orphanet Journal of...

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VI Edition: Focus in Paediatric Oncology and Haematology 2025

VI Edition: Focus in Paediatric Oncology and Haematology 2025

2025-04-15

Don't miss the 6th edition of this webinar which will...

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ERN-EuroBloodNet Welcomes New ePAG Representatives: Jana Pelouchova and Marius Tanase

ERN-EuroBloodNet Welcomes New ePAG Representatives: Jana Pelouchova and Marius Tanase

2025-03-31

ERN-EuroBloodNet is pleased to welcome Jana Pelouchova and Marius Tanase...

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ERN-EuroBloodNet at EHA2025 Congress, save the date!

ERN-EuroBloodNet at EHA2025 Congress, save the date!

2025-03-28

ERN-EuroBloodNet will be present on this EHA2025 through a dedicated...

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World Orphan Drug Congress Europe 2025

World Orphan Drug Congress Europe 2025

2025-03-28

The World Orphan Drug Congress Europe is the largest and...

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European Commission Launches Open-Source HealthData@EU Central Platform – A Major Step for the European Health Data Space

European Commission Launches Open-Source HealthData@EU Central Platform – A Major Step for the European Health Data Space

2025-03-18

The European Commission published the open-source release of the HealthData@EU...

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European Parliament Consultation on Rare Diseases. Contribute before 31st March!

European Parliament Consultation on Rare Diseases. Contribute before 31st March!

2025-03-10

The purpose of the public consultation is to provide a...

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New Clinical Trial Map enhances access to research information across the EU

New Clinical Trial Map enhances access to research information across the EU

2025-03-09

The map is designed to provide patients and healthcare professionals...

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Regulation on the European Health Data Space published!

Regulation on the European Health Data Space published!

2025-03-05

The Regulation is an important milestone in the EU’s efforts...

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Rare Disease Day 2025 is here!

Rare Disease Day 2025 is here!

2025-02-26

Raising awareness and generating change for the 300 million people...

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JARDIN Care Pathways Toolkit for Healthcare Professionals & Patient Representatives

JARDIN Care Pathways Toolkit for Healthcare Professionals & Patient Representatives

2025-02-25

JARDIN Care Pathways Toolkit has been released to support healthcare professionals,...

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The European Commission launches new communication material on ERNs and Rare Diseases!

The European Commission launches new communication material on ERNs and Rare Diseases!

2025-02-25

Check the 2 new factsheets and booklet celebrating the dedication...

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ERN-EuroBloodNet clinical practice guidelines on Diagnosis and treatment of Burkitt lymphoma in adults has been published!

ERN-EuroBloodNet clinical practice guidelines on Diagnosis and treatment of Burkitt lymphoma in adults has been published!

2025-02-24

ERN-EuroBloodNet expert panel has reviewed recent advances in the management...

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Innovative Therapies & Unequal Access: Addressing the Challenges in European Public Health for Rare Diseases

Innovative Therapies & Unequal Access: Addressing the Challenges in European Public Health for Rare Diseases

2025-02-21

Mariangela Pellegrini from ERN-EuroBloodNet Addressed This Topic at ECRD 2024

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Three new ERN-EuroBloodNet Dissemination Pills already available!

Three new ERN-EuroBloodNet Dissemination Pills already available!

2025-02-04

The new webinar program has been created to increase awareness...

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Develop Child and Orphan Device Evaluation support (DeCODe) Project – Call for Support is now open!

Develop Child and Orphan Device Evaluation support (DeCODe) Project – Call for Support is now open!

2025-01-30

Support is available for both new device development and the...

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Join us this 1st February the European Von Willebrand Disease awareness day 2025!

Join us this 1st February the European Von Willebrand Disease awareness day 2025!

2025-01-28

On February 1, the European Haemophilia Consortium (EHC) marks the European...

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New European survey on "Artificial Intelligence in Haematology: Knowledge and Perspectives"! Contribute before 25th February!

New European survey on "Artificial Intelligence in Haematology: Knowledge and Perspectives"! Contribute before 25th February!

2025-01-22

The aim of the European survey on "Artificial Intelligence in Haematology:...

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IHI RealiseD Project Launches to Change the Paradigm for Clinical Trials in Ultra-Rare Diseases

IHI RealiseD Project Launches to Change the Paradigm for Clinical Trials in Ultra-Rare Diseases

2025-01-09

The new European public-private partnership aims to optimise and accelerate...

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Clinical Patient Management System 2.0 is already available!

Clinical Patient Management System 2.0 is already available!

2024-12-20

CPMS 2.0 includes new functionalities that facilitates the use of...

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Check the ERN-EuroBloodNet 6th Progress meeting outcomes!

Check the ERN-EuroBloodNet 6th Progress meeting outcomes!

2024-12-19

ERN-EuroBloodNet 6th Progress meeting was held 21st November 2024 online, including...

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ERN-EuroBloodNet at the 66th American Society of Hematology (ASH) Annual Meeting and Exposition!

ERN-EuroBloodNet at the 66th American Society of Hematology (ASH) Annual Meeting and Exposition!

2024-12-12

The 66th edition of the American Society of Hematology (ASH) annual meeting...

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ERDERA 2025 Joint Transnational Call has been launched, apply now!

ERDERA 2025 Joint Transnational Call has been launched, apply now!

2024-12-11

ERDERA JTC 2025 invites innovative research proposals focusing on "Pre-clinical therapy studies for...

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The European Commission has published the report on Independent Evaluations of ERNs and Healthcare Providers!

The European Commission has published the report on Independent Evaluations of ERNs and Healthcare Providers!

2024-11-29

This report showcases major achievements and areas for growth after...

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ERN-EuroBloodNet 6th Progress Meeting will be held the 21 November 2024 online, register!

ERN-EuroBloodNet 6th Progress Meeting will be held the 21 November 2024 online, register!

2024-11-05

Block your agenda to attend the ERN-EuroBloodNet's event of every...

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XIV Pediatric Hematology Course "All in Red Betting: on Erythropathology" will take place on Sant Joan de Déu Hospital (Barcelona) next 14th March 2025

XIV Pediatric Hematology Course "All in Red Betting: on Erythropathology" will take place on Sant Joan de Déu Hospital (Barcelona) next 14th March 2025

2024-10-31

The course endorsed by ERN-EuroBloodNet, addresses red blood cell pathology...

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Do not miss “From Legacy to Leading Edge in Myeloproliferative Neoplasms Care and Research" organized by Istituto Scientiﬁco Romagnolo per lo Studio e la Cura dei Tumori

Do not miss “From Legacy to Leading Edge in Myeloproliferative Neoplasms Care and Research" organized by Istituto Scientiﬁco Romagnolo per lo Studio e la Cura dei Tumori

2024-10-23

The course that will be held next 8th and 9th...

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19th ASCAT Conference in London puts patients at the heart of scientific discourse through ERN-EuroBloodNet

19th ASCAT Conference in London puts patients at the heart of scientific discourse through ERN-EuroBloodNet

2024-10-17

The ERN-EuroBloodNet annual event at ASCAT highlights the crucial role...

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European Rare Blood Disorders Platform (ENROL) Data Access Committee meeting was held 25th September 2024 in Barcelona

European Rare Blood Disorders Platform (ENROL) Data Access Committee meeting was held 25th September 2024 in Barcelona

2024-10-16

The meeting was held in Vall d'Hebron University Hospital (Barcelona)...

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European Rare Diseases Research Alliance (ERDERA) is seeking experts to join its Multistakeholder Advisory Board (MAB)!

European Rare Diseases Research Alliance (ERDERA) is seeking experts to join its Multistakeholder Advisory Board (MAB)!

2024-10-11

Submit your application by October 31, 2024

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The ERN Preceptorship experience in the Istituto Giannina Gaslini, Genoa, Italy

The ERN Preceptorship experience in the Istituto Giannina Gaslini, Genoa, Italy

2024-09-23

Discover the experience of the coordinator and the participants!

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Do you know the ERN-EuroBloodNet Dissemination Pills?

Do you know the ERN-EuroBloodNet Dissemination Pills?

2024-09-20

The ERN-EuroBloodNet Dissemination webinar program has been created to increase...

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Learn more about the Diagnosis of Rare Diseases: From the Clinic to Research and Back

Learn more about the Diagnosis of Rare Diseases: From the Clinic to Research and Back

2024-09-20

Organized by the European Joint Programme on Rare Diseases (EJPRD),...

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The EU survey on SCD is still active!

The EU survey on SCD is still active!

2024-09-12

ERN-EuroBloodNet is gathering the voices of people living with Sickle...

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The European Joint Programme on Rare Diseases (EJP RD) is now ERDERA!

The European Joint Programme on Rare Diseases (EJP RD) is now ERDERA!

2024-09-12

ERDERA opens a new era for rare disease research in...

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Save the date for the 19th Annual Sickle Cell & Thalassaemia Conference!

Save the date for the 19th Annual Sickle Cell & Thalassaemia Conference!

2024-08-30

From 02-05 October 2024, the 19th Annual Scientific Conference will...

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Are you ready for September? Mark your calendar and don't miss any of our EDU Blood Academy activities!

Are you ready for September? Mark your calendar and don't miss any of our EDU Blood Academy activities!

2024-08-29

Discover the educational content created by the ERN-EuroBloodNet that targets...

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EJP RD survey on "Data Resources and Tools Knowledge Awareness

EJP RD survey on "Data Resources and Tools Knowledge Awareness

2024-08-09

The survey aims to assess the knowledge of Rare Diseases...

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The ERN-EuroBloodNet join the World Castleman Disease Day to raise awareness and fight against this rare disease!

The ERN-EuroBloodNet join the World Castleman Disease Day to raise awareness and fight against this rare disease!

2024-07-23

World Castleman disease day is celebrated on 23 June each...

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ERN-EuroBloodNet was present in the International Conference on Sickle Cell Disease in Lusophone Countries, last June 19th.

ERN-EuroBloodNet was present in the International Conference on Sickle Cell Disease in Lusophone Countries, last June 19th.

2024-07-18

The Conference had representatives from the WHO, the EHA, ERN-EuroBloodNet,...

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New ERN-EuroBloodNet publication on the limited access to transcranial doppler screening and stroke prevention for children with sickle cell disease in Europe

New ERN-EuroBloodNet publication on the limited access to transcranial doppler screening and stroke prevention for children with sickle cell disease in Europe

2024-07-16

Results on the ERN-EuroBloodNet EU mapping exercise conducted to evaluate...

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Outcomes of the ERN-EuroBloodNet meeting at the EHA Congress 2024

Outcomes of the ERN-EuroBloodNet meeting at the EHA Congress 2024

2024-07-12

Discover more about the ERN-EuroBloodNet experience at the congress!

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New EJP RD MOOC "Innovative Therapies and Personalized Medicine for Rare Diseases"

New EJP RD MOOC "Innovative Therapies and Personalized Medicine for Rare Diseases"

2024-07-05

The MOOC will start on Monday July 8th and registration...

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New publication of the European Joint Programme on Rare Diseases: Building the Rare Diseases Research Ecosystem

New publication of the European Joint Programme on Rare Diseases: Building the Rare Diseases Research Ecosystem

2024-07-03

"The European joint programme on rare diseases: building the rare...

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Join the paediatric Patient Expert Group (PEG)!

Join the paediatric Patient Expert Group (PEG)!

2024-06-28

This is an initiative of the EJP RD and as...

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The second training program on AI for Hematology, with GenoMed4All, is coming back!

The second training program on AI for Hematology, with GenoMed4All, is coming back!

2024-06-21

Starting on 18th of September, the program contains 6 sessions...

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ERICA Project General Assembly & ERN Research Conference

ERICA Project General Assembly & ERN Research Conference

2024-06-20

The ERICA 4th General Assembly & ERN Research Conference will...

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First International AL Amyloidosis meeting, for patients and doctors

First International AL Amyloidosis meeting, for patients and doctors

2024-06-20

This Hybrid event will take place the 5th and 6th...

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For World Sickle Cell Day 2024, ERN-EuroBloodNet is gathering the voices of people living with Sickle Cell Disease globally via a survey.

For World Sickle Cell Day 2024, ERN-EuroBloodNet is gathering the voices of people living with Sickle Cell Disease globally via a survey.

2024-06-19

Updated second version of the anonymous survey to assess the...

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Save the date! #EHA2025 will be held in Milan, Italy from June 12-15.

Save the date! #EHA2025 will be held in Milan, Italy from June 12-15.

2024-06-18

Join the largest haematology event in Europe at the 30th...

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Rare Diseases Trainings organized by the EJP RD about the Virtual Platform

Rare Diseases Trainings organized by the EJP RD about the Virtual Platform

2024-06-17

The EJP RD End-user Training Webinar will be held on...

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The first International Conference Sickle Cell Disease in Lusophone Countries will be held on June 19, 2024 in Lisbon, Portugal!

The first International Conference Sickle Cell Disease in Lusophone Countries will be held on June 19, 2024 in Lisbon, Portugal!

2024-06-17

The Conference is organized by APPDH in partnership with DrepaComunidade,...

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Check out where our booth will be at the EHA Congress 2024 & the agenda of activities!

Check out where our booth will be at the EHA Congress 2024 & the agenda of activities!

2024-06-06

Do not miss the opportunity to stay updated on the...

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Two new innovative publications have been lauched by the EJP RD & IRDiRC.

Two new innovative publications have been lauched by the EJP RD & IRDiRC.

2024-06-04

Discover more about the groundbreaking approach of these publications!

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The Education Newsletter has recently been launched!

The Education Newsletter has recently been launched!

2024-06-03

Find out everything you need to know about our education...

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Outcomes of the ERN-EuroBloodNet participation at the ECRD Conference 2024, in Brussels.

Outcomes of the ERN-EuroBloodNet participation at the ECRD Conference 2024, in Brussels.

2024-05-30

The successful 12th ECRD conference was attended by more than...

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The 77th World Health Assembly will be held on 27 May – 1 June 2024

The 77th World Health Assembly will be held on 27 May – 1 June 2024

2024-05-26

The Thalassaemia International Federation (TIF) and the World Federation of...

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The 3rd EJPRD MOOC on "Health Data Ethics & Regulatory Frameworks in Rare Disease Research" has been launched!

The 3rd EJPRD MOOC on "Health Data Ethics & Regulatory Frameworks in Rare Disease Research" has been launched!

2024-05-06

Join from May 6th to June 28th for an enriching...

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The International Thalassaemia Day is coming up!

The International Thalassaemia Day is coming up!

2024-05-03

On 8 May 2024, the global thalassaemia community will unite...

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ERN-EuroBloodNet will be present at the ECRD 2024!

ERN-EuroBloodNet will be present at the ECRD 2024!

2024-05-02

The 12th Edition will be held from 15th to 16th...

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The ERN-EuroBloodNet team has been expanded with a new incorporation in Barcelona!

The ERN-EuroBloodNet team has been expanded with a new incorporation in Barcelona!

2024-05-02

Daiana Lopez has recently joined the ERN-EuroBloodNet team, based in...

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ERN-EuroBloodNet Meeting at EHA Annual Congress in Madrid 2024

ERN-EuroBloodNet Meeting at EHA Annual Congress in Madrid 2024

2024-04-26

The dedicated ERN-EuroBloodNet meeting will take place at EHA Annual...

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Don't miss the next EURORDIS Healthcare Webinar series on 29 April!

Don't miss the next EURORDIS Healthcare Webinar series on 29 April!

2024-04-24

Join the online Webinar next Monday 29 April at 14:00(CET)...

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Focus in Paediatric Oncology and Haematology 2024 Webinar

Focus in Paediatric Oncology and Haematology 2024 Webinar

2024-04-19

Don't miss the fifth edition of this program which will...

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EHA & ERN-EuroBloodNet Spotlight on Hypereosinophilic Syndrome

EHA & ERN-EuroBloodNet Spotlight on Hypereosinophilic Syndrome

2024-04-02

Learn more about Hypereosinophilic Syndrome (HES) through an accredited European...

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CALL FOR PARTICIPANTS – The ERN-EuroBloodNet is inviting you to participate in Medical Education Onsite Program

CALL FOR PARTICIPANTS – The ERN-EuroBloodNet is inviting you to participate in Medical Education Onsite Program

2024-03-25

Learn about Aplastic Anemia in Patients of All Ages by...

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Are you ready for the 12th edition of the ECRD?

Are you ready for the 12th edition of the ECRD?

2024-03-03

Do not miss the oportunity to join the fully hybrid...

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Do not miss the opportunity to be involved in the Rare Disease Day 2024!

Do not miss the opportunity to be involved in the Rare Disease Day 2024!

2024-02-29

The Rare Disease Day team has led to your disposition, material...

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ENROL Knowledge Pills just published: unleashing Rare Hematological insights on patient’s registries

ENROL Knowledge Pills just published: unleashing Rare Hematological insights on patient’s registries

2024-02-29

Embark on a journey of knowledge with ENROL! Watch the...

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The ERN-EuroBloodNet community supports the Rare Disease Day!

The ERN-EuroBloodNet community supports the Rare Disease Day!

2024-02-29

Several actions to raise awareness have been organized around Europe.

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The ERN-EuroBloodNet shines a light for rare diseases every day of the year

The ERN-EuroBloodNet shines a light for rare diseases every day of the year

2024-02-29

Working for more than 5 years to improve the lives...

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Participate in the EHA AYA Hematology Care Survey!

Participate in the EHA AYA Hematology Care Survey!

2024-02-21

Whether you are a practicing clinical hematologist specializing in pediatric...

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Participate in the European VWD Awareness Day 2024 organized by the EHC!

Participate in the European VWD Awareness Day 2024 organized by the EHC!

2024-02-01

Discover all the details of the campaign lauched this year...

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Participate in the new educational action on Von Willebrand Disease and obtain knowledge to raise awareness of this disease

Participate in the new educational action on Von Willebrand Disease and obtain knowledge to raise awareness of this disease

2024-02-01

The launch of the VWD program is timed to correspond with...

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Do you know how to be involved in the Rare Disease Day 2024?

Do you know how to be involved in the Rare Disease Day 2024?

2024-01-31

The Rare Disease Day team has led to your disposition, material...

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EJP RD Final Conference will take place next May

EJP RD Final Conference will take place next May

2024-01-31

Block your agenda to attend the event!

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Last days to submit your poster abstract to the Hybrid ECRD!

Last days to submit your poster abstract to the Hybrid ECRD!

2024-01-31

Submit your proposal before 23rd of February 2024.

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Do not miss the opportunity to participate in the EHA Research Conference 2024

Do not miss the opportunity to participate in the EHA Research Conference 2024

2024-01-30

This small, intimate and research topic-focused meeting is entitled “Molecular vulnerabilities...

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Unveiling Tomorrow's Healthcare: GenoMed4All Consortium Meeting Recap

Unveiling Tomorrow's Healthcare: GenoMed4All Consortium Meeting Recap

2024-01-30

This assembly emerged as a beacon of collaboration and resilience,...

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Advancing Healthcare Innovation: Insights from the SYNTHEMA Consortium Meeting in Barcelona

Advancing Healthcare Innovation: Insights from the SYNTHEMA Consortium Meeting in Barcelona

2024-01-28

The consortium, a collaboration of various European entities, aims to...

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New IRDiRC publication "Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community"

New IRDiRC publication "Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community"

2024-01-19

Dive into the latest insights from the IRDiRC Task Force...

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Do not miss the 13th edition of the course "Pediatric Hematology: Unmasking Immune Cytopenia"

Do not miss the 13th edition of the course "Pediatric Hematology: Unmasking Immune Cytopenia"

2024-01-14

Attendance is available in both formats, on-site and online.

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Do not miss the next EJP RD's ERN Webinar Training: Real-World Data, Machine Learning, and Deep Analytics in Rare Diseases: "Regulatory grade data collection for Marketing Authorization Submissions - what is Buzz, what is Realistic?"

Do not miss the next EJP RD's ERN Webinar Training: Real-World Data, Machine Learning, and Deep Analytics in Rare Diseases: "Regulatory grade data collection for Marketing Authorization Submissions - what is Buzz, what is Realistic?"

2023-12-29

Perform your registration before January 25!

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Hybrid ECRD poster abstract submission 2024 is still open!

Hybrid ECRD poster abstract submission 2024 is still open!

2023-12-29

Submit your proposal before 23rd of February 2024.

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6th European CAR T-cell Meeting hosted by the EBMT and the European Hematology Association (EHA)!

6th European CAR T-cell Meeting hosted by the EBMT and the European Hematology Association (EHA)!

2023-12-27

Open to Hematologists, oncologists, physicians, nurses, data managers, supply chain...

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Are you going to miss the 4th webinar session of Topic on Focus on Constitutional Thrombocytopenia program?

Are you going to miss the 4th webinar session of Topic on Focus on Constitutional Thrombocytopenia program?

2023-12-27

Join us next 31st of January at 5 pm (CET).

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Happy Holidays and Happy New Year 2024!

Happy Holidays and Happy New Year 2024!

2023-12-20

May the peace and joy of the holidays be with...

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Participate in the 2024 Photo Contest Black Pearl Awards!

Participate in the 2024 Photo Contest Black Pearl Awards!

2023-12-18

Submit your proposal before 31st of January 2024.

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EJP RD training on strategies to foster solutions of undiagnosed rare disease cases will be held next March 2024

EJP RD training on strategies to foster solutions of undiagnosed rare disease cases will be held next March 2024

2023-12-12

Perform your registration before February 15th!

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DrepaComunidade presenting at the International Conference on Art and Health

DrepaComunidade presenting at the International Conference on Art and Health

2023-12-04

The work presented explores the potential of utilizing art and creativity...

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ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2023

ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2023

2023-12-01

The SCD patient trainings organised by the ERN-EuroBloodNet at the...

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Are you going to miss the first ERN-EuroBloodNet Thursday webinar of 2024?

Are you going to miss the first ERN-EuroBloodNet Thursday webinar of 2024?

2023-11-30

Register for the new webinar sessions on Rare Hematological Diseases...

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The next ECRD will be held next May 2024!

The next ECRD will be held next May 2024!

2023-11-30

Get ready for the next ECRD, a fully hybrid conference...

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Discover all the details of the 5th ERN-EuroBloodNet Progress Meeting

Discover all the details of the 5th ERN-EuroBloodNet Progress Meeting

2023-11-26

Thank you so much to the 127 attendants for their...

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EHA2024 will be held next June 2024 in Madrid!

EHA2024 will be held next June 2024 in Madrid!

2023-11-19

Block your agenda with the published dates.

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Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience has been published in the Orphanet Journal of Rare Diseases

Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience has been published in the Orphanet Journal of Rare Diseases

2023-11-03

The article analyses how the ERN-EuroBloodNet workshops with patients at...

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HELIOS project has started!

HELIOS project has started!

2023-11-01

The first reunion of the HELIOS Management Committee was held...

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Last European Commision news about the ERNs

Last European Commision news about the ERNs

2023-10-30

Thank to the ERNs project the European Commission is making...

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Thursday webinars are making a comeback!

Thursday webinars are making a comeback!

2023-10-29

Stay tuned to our social media channels.

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Do not miss the “XI Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy"

Do not miss the “XI Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy"

2023-10-22

The course that will be addressed next 16th and 30th...

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ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – DEADLINE EXTENDED until 15th of November!

ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – DEADLINE EXTENDED until 15th of November!

2023-10-22

Is it time for an ERN-EuroBloodNet working group thrombosis? If...

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The DrepaCommunity was in celebration!

The DrepaCommunity was in celebration!

2023-10-10

Attendants had the opportunity to be aware of ERN-EuroBloodNet's actions...

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Have you heard about the MOOC From Lab to Clinic: Translational Research for Rare Diseases?

Have you heard about the MOOC From Lab to Clinic: Translational Research for Rare Diseases?

2023-10-09

Participate in this course before December 2nd, 2023.

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The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks

The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks

2023-10-04

The objective of this action is to guarantee the continuation...

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Do not miss the opportunity to take part in EHA advocacy!

Do not miss the opportunity to take part in EHA advocacy!

2023-09-28

Provide your input on the EC legislation's proposed definition of...

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ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – DEADLINE EXTENDED until 20th of October!

ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – DEADLINE EXTENDED until 20th of October!

2023-09-27

Is it time for an ERN-EuroBloodNet working group thrombosis? If...

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ERN-EuroBloodNet Topic on Focus on Constitutional thrombocytopenia for health professionals has started!

ERN-EuroBloodNet Topic on Focus on Constitutional thrombocytopenia for health professionals has started!

2023-09-24

The 2nd accredited online session of this educational program will...

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Participate in the Global Survey for people living with Sickle Cell Disease!

Participate in the Global Survey for people living with Sickle Cell Disease!

2023-09-18

This anonymous survey will assess the point of view of...

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The ERN-EuroBloodNet coordination team has been expanded with the new incorporation in Paris!

The ERN-EuroBloodNet coordination team has been expanded with the new incorporation in Paris!

2023-09-18

Giulio Sannasardo has joined the ERN-EuroBloodNet coordination team, based at...

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The 5th Progress Meeting will be held next 9th November 2023!

The 5th Progress Meeting will be held next 9th November 2023!

2023-09-01

Block your agenda to attend the ERN-EuroBloodNet's event of every...

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New ERN-EuroBloodNet ePAG!

New ERN-EuroBloodNet ePAG!

2023-08-04

Ioana Todorova-Yanakieva is the new ePAG for Thrombotic thrombocytopenic purpura...

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The 5th Progress Meeting will be held next 9th November 2023!

The 5th Progress Meeting will be held next 9th November 2023!

2023-08-02

Block your agenda to attend the ERN-EuroBloodNet's event of every...

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Do not miss “Advances in pediatric oncology and hematology" the online course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

Do not miss “Advances in pediatric oncology and hematology" the online course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

2023-08-01

The course that will be held next 8th, 15th, 22nd and...

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ERN-EuroBloodNet Topic on Focus on Constitutional thrombocytopenia for health professionals

ERN-EuroBloodNet Topic on Focus on Constitutional thrombocytopenia for health professionals

2023-08-01

A new accredited online educational program will start in September...

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New ERN-EuroBloodNet's Flyers are available on the website

New ERN-EuroBloodNet's Flyers are available on the website

2023-08-01

Discover the content and share it among your community!

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New on ERN-EuroBloodNet's website: Patient's Assistance Info Point!

New on ERN-EuroBloodNet's website: Patient's Assistance Info Point!

2023-08-01

The ERN-EuroBloodNet’s Assistance Info Point is a simple but effective...

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The ERN-EuroBloodNet team has been expanded with the new incorporation of the Educational activities for Health Professionals Manager!

The ERN-EuroBloodNet team has been expanded with the new incorporation of the Educational activities for Health Professionals Manager!

2023-08-01

Maryam Lalem has joined the ERN-EuroBloodNet team based in Brussels.

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2023-07-30

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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GenoMed4All & ERN-EuroBloodNet Educational program on Artificial Intelligence in hematology for public-at-large

GenoMed4All & ERN-EuroBloodNet Educational program on Artificial Intelligence in hematology for public-at-large

2023-07-25

A new educational online program will be launched in September!

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ERN-EuroBloodNet at the General Assembly of the European Rare Disease Research Coordination and Support Action consortium (ERICA)

ERN-EuroBloodNet at the General Assembly of the European Rare Disease Research Coordination and Support Action consortium (ERICA)

2023-07-18

The ERN-EuroBloodNet presented in Madrid the results & next steps...

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IMPACT-AML Kick-starts its Mission!

IMPACT-AML Kick-starts its Mission!

2023-07-16

The primary objectives were unveiled during the meeting, each aimed...

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New Tele-expertise meeting on Rare Haemolytic Anaemias and Next Generation Sequencing (NGS)

New Tele-expertise meeting on Rare Haemolytic Anaemias and Next Generation Sequencing (NGS)

2023-07-13

The event has been the occasion to exchange best practices...

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Outcomes of the ERN-EuroBloodNet meeting at the EHA2023 Hybrid Congress

Outcomes of the ERN-EuroBloodNet meeting at the EHA2023 Hybrid Congress

2023-07-13

Discover the ERN-EuroBloodNet experience at the congress!

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CPMS Updates and New Guides

CPMS Updates and New Guides

2023-07-12

Have a look at our CPMS guides to be part...

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“Sickle cell disease landscape and challenges in the EU: the ERN-EuroBloodNet perspective” has been published at The Lancet Haematology!

“Sickle cell disease landscape and challenges in the EU: the ERN-EuroBloodNet perspective” has been published at The Lancet Haematology!

2023-07-11

The Viewpoint summarizes the role of ERN-EuroBloodNet to improve the...

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Do not miss next ERICA workshop focused on drug repurposing in rare diseases!

Do not miss next ERICA workshop focused on drug repurposing in rare diseases!

2023-06-28

Participants can join the 7th of July meeting in person...

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The EHA Clinical Research Training in Hematology call is opened until July 18th!

The EHA Clinical Research Training in Hematology call is opened until July 18th!

2023-06-28

Twenty early-career scientists will be selected to participate in the...

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Help EURORDIS to develop a Patient Partnership Framework for the ERNs!

Help EURORDIS to develop a Patient Partnership Framework for the ERNs!

2023-06-20

Submit your answers before 26th of June 2023.

Read More

Click on the interactive ERN-EuroBloodNet poster for celebrating the 2023 World Sickle Cell Day!

Click on the interactive ERN-EuroBloodNet poster for celebrating the 2023 World Sickle Cell Day!

2023-06-16

Discover how the ERN fosters research, provides education and improves...

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ERN-EuroBloodNet at the Sickle Cell Consortium 24 Hour celebration of World Sickle Cell Day

ERN-EuroBloodNet at the Sickle Cell Consortium 24 Hour celebration of World Sickle Cell Day

2023-06-16

The ERN-EuroBloodNet invites you to participate at the 4th Annual...

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DEADLINE EXTENDED - The ERN-EuroBloodNet is mapping the availability of PNH Drugs and its reimbursement states in European Member States

DEADLINE EXTENDED - The ERN-EuroBloodNet is mapping the availability of PNH Drugs and its reimbursement states in European Member States

2023-06-11

The results of this study will be used for a...

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ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – DEADLINE EXTENDED until 31st July!

ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – DEADLINE EXTENDED until 31st July!

2023-06-11

Is it time for an ERN-EuroBloodNet working group thrombosis? If...

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The ERN Preceptorship experience in Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan

The ERN Preceptorship experience in Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan

2023-06-11

Discover the experience of the coordinator and the participants!

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Discover the outcomes of the ENROL closing meeting - 1st phase of the project!

Discover the outcomes of the ENROL closing meeting - 1st phase of the project!

2023-06-01

The meeting has been held online last Wednesday 3rd of...

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Now available: ENROL recommendations for interoperability!

Now available: ENROL recommendations for interoperability!

2023-05-31

The EU RD-CDS codification schemes have been used for the...

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The ERN-EuroBloodNet will be present at the EHA2023!

The ERN-EuroBloodNet will be present at the EHA2023!

2023-05-31

Do not miss the opportunity to stay updated on the...

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The ERN Preceptorship experience in the Archbishop Makarios III Hospital

The ERN Preceptorship experience in the Archbishop Makarios III Hospital

2023-05-28

Discover the experience of the coordinator and the participants!

Read More

The ERN-EuroBloodNet is mapping the availability of PNH Drugs and its reimbursement states in European Member States

The ERN-EuroBloodNet is mapping the availability of PNH Drugs and its reimbursement states in European Member States

2023-05-24

The results of this study will be used for a...

Read More

ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – Open until 30th June!

ERN-EuroBloodNet European Mapping for management of Venous Thrombosis and Arterial Thrombosis in Pediatric Patients – Open until 30th June!

2023-05-23

Is it time for an ERN-EuroBloodNet working group thrombosis? If...

Read More

Participate in the ERICA WP4 Survey on ERNs and Clinical Research!

Participate in the ERICA WP4 Survey on ERNs and Clinical Research!

2023-05-14

ERN Coordinators and HCP Members of ERNs are invited to...

Read More

The International Summer School on Rare Disease Registries and FAIRification of Data registry will take place next September!

The International Summer School on Rare Disease Registries and FAIRification of Data registry will take place next September!

2023-05-14

It has been organised by Istituto Superiore di Sanità (ISS) in close...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2023-04-30

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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The International Neurovascular Training Course on Sickle Cell Disease has been held last March!

The International Neurovascular Training Course on Sickle Cell Disease has been held last March!

2023-04-28

52 participants had the opportunity to learn about the state-of-the-art...

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Videos of ENROL Webinars for patients are now available!

Videos of ENROL Webinars for patients are now available!

2023-04-24

You can watch the recordings of the educational sessions on...

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ERN-EuroBloodNet at the EHA2023 Hybrid Congress!

ERN-EuroBloodNet at the EHA2023 Hybrid Congress!

2023-04-19

Stay tunned to our publications for further information.

Read More

The ERN Preceptorship experience in the IRCCS Istituto Giannina Gaslini, Genoa

The ERN Preceptorship experience in the IRCCS Istituto Giannina Gaslini, Genoa

2023-04-19

Discover the experience of the coordinator and the participants!

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New session of the free "From Lab to Clinic: Translational Research for Rare Diseases" online course

New session of the free "From Lab to Clinic: Translational Research for Rare Diseases" online course

2023-04-12

Participants can learn at their own pace, and expert mentors...

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ENROL closing meeting - 1st phase of the project!

ENROL closing meeting - 1st phase of the project!

2023-04-01

The meeting will be held online on Wednesday 3rd of...

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Participate in “Next Generation Diagnosis in Leukemia"

Participate in “Next Generation Diagnosis in Leukemia"

2023-03-30

The free virtual course is open to medical doctors and...

Read More

The ERN Preceptorship experience in the AUSL Romagna- Presidio Ospedaliero di Ravenna

The ERN Preceptorship experience in the AUSL Romagna- Presidio Ospedaliero di Ravenna

2023-03-29

Discover the experience of the coordinator and the participants!

Read More

GenoMed4All Consortium and ERN-EuroBloodNet working together!

GenoMed4All Consortium and ERN-EuroBloodNet working together!

2023-03-22

A comment of the team has been published on Hemasphere.

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Develop your leadership skills in Poland... with your accommodation and meal costs covered!

Develop your leadership skills in Poland... with your accommodation and meal costs covered!

2023-03-17

Submit your application to enjoy one of the 21 fellowship...

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ERN-EuroBloodNet Topic on Focus on Constitutional thrombocytopenia for health professionals

ERN-EuroBloodNet Topic on Focus on Constitutional thrombocytopenia for health professionals

2023-03-15

A new accredited online educational program will be launched in...

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EHA2023 Hybrid Congress Program is available!

EHA2023 Hybrid Congress Program is available!

2023-03-14

Visit the website to discover the topics the congress offers...

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IRDiRC ‘s Interdisciplinary Scientific Committee is looking for a new Member!

IRDiRC ‘s Interdisciplinary Scientific Committee is looking for a new Member!

2023-03-03

Interested candidates are invited to send their resume, biosketch and...

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Do you know gow to be involved in the Rare Disease Day 2023?

Do you know gow to be involved in the Rare Disease Day 2023?

2023-02-28

The Rare Disease Day team has led to your disposition, material...

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Last hours to submit your abstract to the EHA2023 Hybrid Congress!

Last hours to submit your abstract to the EHA2023 Hybrid Congress!

2023-02-28

The deadline for abstract submission is March 1, 2023 at...

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REGISTRATION DEADLINE EXTENDED (6th March): Attend the International Neurovascular Training Course on Sickle Cell Disease!

REGISTRATION DEADLINE EXTENDED (6th March): Attend the International Neurovascular Training Course on Sickle Cell Disease!

2023-02-28

The course is addressed to medical doctors specialized in pediatrics,...

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The ERN-EuroBloodNet community supports the Rare Disease Day!

The ERN-EuroBloodNet community supports the Rare Disease Day!

2023-02-28

Several actions to raise awareness have been organized around Europe.

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The project "Connecting EuroBloodNet III" has recently finished!

The project "Connecting EuroBloodNet III" has recently finished!

2023-02-28

Actions initiated will be continued through the ERN-EuroBloodNet grants aiming...

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ERN-EuroBloodNet supporting the Rare Disease Day 2023

ERN-EuroBloodNet supporting the Rare Disease Day 2023

2023-02-27

By adhering to the Rare Diseass Day 2023, the ERN-EuroBlodNet...

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Launch of public consultation on ACT EU multi-stakeholder platform until 3rd March 2023

Launch of public consultation on ACT EU multi-stakeholder platform until 3rd March 2023

2023-02-26

Answer the survey before 3rd of March 2023 at midnight...

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New: Symposium focused on Sickle cell Disease and Thalassemia!

New: Symposium focused on Sickle cell Disease and Thalassemia!

2023-02-16

Do not miss the event organized by the Hospital General...

Read More

Attend the International Neurovascular Training Course on Sickle Cell Disease!

Attend the International Neurovascular Training Course on Sickle Cell Disease!

2023-02-12

The course is addressed to medical doctors specialized in pediatrics,...

Read More

The ERN Preceptorship experience in the AUSL Romagna- Presidio Ospedaliero di Ravenna

The ERN Preceptorship experience in the AUSL Romagna- Presidio Ospedaliero di Ravenna

2023-02-12

Discover the experience of the coordinator and the participants!

Read More

A new EJP RD's ERN Workshop will be held in May!

A new EJP RD's ERN Workshop will be held in May!

2023-02-08

Perform you registration before the next 22nd of February.

Read More

Do not miss the next EJP RD's ERN Workshop!

Do not miss the next EJP RD's ERN Workshop!

2023-02-08

Perform you registration before the next 22nd of February.

Read More

Are you ready for EHA2023 Hybrid Congress?

Are you ready for EHA2023 Hybrid Congress?

2023-01-31

The preliminary program is already available on the EHA website!

Read More

Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2023-01-31

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

Read More

New IRDiRC call for Members!

New IRDiRC call for Members!

2023-01-30

Discover the newly approves task forces.

Read More

NEW: CPMS simplified versions of step-by-step guide!!

NEW: CPMS simplified versions of step-by-step guide!!

2023-01-30

Do you need expert’s advice on rare diseases cases? Do...

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Next month be involved in Rare Disease Day 2023!

Next month be involved in Rare Disease Day 2023!

2023-01-30

The Rare Disease Day team has led to your disposition, material...

Read More

RADeep last press release is available!

RADeep last press release is available!

2023-01-29

Discover the lasts news about this project!

Read More

The 2023 EURORDIS Photo Award finalists have been selected

The 2023 EURORDIS Photo Award finalists have been selected

2023-01-29

Vote for your favourite photo!

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Do not miss the next EJP RD's ERN Workshop: "Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach"

Do not miss the next EJP RD's ERN Workshop: "Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach"

2023-01-23

The in-person event will take place on 22-23 May 2023.

Read More

Follow the three webinars for Patients on Rare Haematological Diseases Registries !

Follow the three webinars for Patients on Rare Haematological Diseases Registries !

2023-01-23

In February, the ERN-EuroBloodNet is launching the Online Educational Program...

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The ERN Preceptorship experience in the CUB-Hôpital Erasme

The ERN Preceptorship experience in the CUB-Hôpital Erasme

2023-01-23

Discover the experience of the coordinators and the participants!

Read More

The EURORDIS Exchange of good practice webinar is now available!

The EURORDIS Exchange of good practice webinar is now available!

2023-01-18

Find all the material related to the webinar on EURORDIS...

Read More

Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2022-12-27

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

Read More

Sickle Cell Disease Patients Conversation Group With A Psychotherapist

Sickle Cell Disease Patients Conversation Group With A Psychotherapist

2022-12-27

The experience of the pilot had in Spain via the...

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The RE(ACT) Congress & IRDiRC Conference

The RE(ACT) Congress & IRDiRC Conference

2022-12-27

The event aims to bring together scientific leaders and experts...

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The ERN Preceptorship experience in The Cyprus Institute of Neurology and Genetics

The ERN Preceptorship experience in The Cyprus Institute of Neurology and Genetics

2022-12-26

Discover the experience of the coordinators and the participant!

Read More

FLASH SALE! Get 25% off your registration fee for the RE(ACT) Congress & IRDiRC Conference

FLASH SALE! Get 25% off your registration fee for the RE(ACT) Congress & IRDiRC Conference

2022-12-22

Use the code "REACTXMAS".

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Happy Holidays and Happy New Year 2023!

Happy Holidays and Happy New Year 2023!

2022-12-22

May the peace and joy of the holidays be with...

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Discover SYNTHEMA!

Discover SYNTHEMA!

2022-12-18

The project aims to create a hub to develop and...

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Registration to the EURORDIS Black Pearl Awards is now open!

Registration to the EURORDIS Black Pearl Awards is now open!

2022-12-16

Take advantage of the early-bird prices until January 16.

Read More

The EHA2023 Hybrid Congress will be held next June!

The EHA2023 Hybrid Congress will be held next June!

2022-12-16

Online registration will open in January 2023.

Read More

"Natural History Studies addressing unmet needs in Rare Diseases" is the new EJP RD Joint Transnational Call 2023

"Natural History Studies addressing unmet needs in Rare Diseases" is the new EJP RD Joint Transnational Call 2023

2022-12-13

The call has been launched last 12th of December 2022!

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Discover how to get involved in Rare Disease Day 2023

Discover how to get involved in Rare Disease Day 2023

2022-12-11

Do not wait until the 28th February to participate. Do...

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Attend to the EJP RD ERN Workshop: RARE TOGETHER!

Attend to the EJP RD ERN Workshop: RARE TOGETHER!

2022-12-07

The in-person event will take place on 8th – 9th May 2023...

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Participate in the EJP RD MOOC (Massive Open Online Course) "Introduction to Translational Research for Rare Disease"

Participate in the EJP RD MOOC (Massive Open Online Course) "Introduction to Translational Research for Rare Disease"

2022-12-07

Mentors and educators who are expert in translational research are...

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Last uptade on RADeep

Last uptade on RADeep

2022-12-05

The first meeting of the Data Access Committee in Barcelona.

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The ERN Preceptorship experience in Erasmus MC: University Medical Center Rotterdam

The ERN Preceptorship experience in Erasmus MC: University Medical Center Rotterdam

2022-11-29

Dr. C. Heleen van Ommen together with her team contributed to the success of...

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ERN-EuroBloodNet SCD Patients Educational Session at 17th Annual Sickle Cell and Thalassaemia Conference (London, October 20th -22nd)

ERN-EuroBloodNet SCD Patients Educational Session at 17th Annual Sickle Cell and Thalassaemia Conference (London, October 20th -22nd)

2022-11-27

Discover the results from Patient Advocacy Training Onsite at ASCAT...

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The 4rth ERN-EuroBloodNet Progress meeting took place on 7th of November 2022!

The 4rth ERN-EuroBloodNet Progress meeting took place on 7th of November 2022!

2022-11-24

Thank you so much to the almost 150 attendants for...

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Register to access on-demand content from the EHA-SWG Diagnosis meeting

Register to access on-demand content from the EHA-SWG Diagnosis meeting

2022-11-22

If you are senior or junior hematologists, laboratory or clinical...

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Join IRDiRC's Therapies Scientific Committee!

Join IRDiRC's Therapies Scientific Committee!

2022-11-18

Submit your application before 16th of December 2022.

Read More

The Networking Support Scheme (NSS) funding opportunity is now open!

The Networking Support Scheme (NSS) funding opportunity is now open!

2022-11-18

Submit your proposal before 1rst of December 2022.

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The EJP RD Joint Transnational Call will be launched soon!

The EJP RD Joint Transnational Call will be launched soon!

2022-11-10

Attend the information webinar next 15th December.

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The ERICA "ERN Data Management Strategy Multistakeholder Workshop"

The ERICA "ERN Data Management Strategy Multistakeholder Workshop"

2022-11-01

The ERN-EuroBloodNet participated in this workshop last October in Heidelberg!

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Do not miss the opportunity to participate in the new edition of EURORDIS Photo Award!

Do not miss the opportunity to participate in the new edition of EURORDIS Photo Award!

2022-10-31

Submit your proposal before 22nd January 2023.

Read More

Participate in the new edition of EURORDIS Photo Award!

Participate in the new edition of EURORDIS Photo Award!

2022-10-31

Submit your proposal before 22nd January 2023.

Read More

Participate in the 5th European CAR T-cell Meeting hosted by The EBMT and the European Hematology Association (EHA)!

Participate in the 5th European CAR T-cell Meeting hosted by The EBMT and the European Hematology Association (EHA)!

2022-10-30

Take advantage of the early bird registration discount: available until...

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New EJP RD video now available

New EJP RD video now available

2022-10-26

Visit the EJP RD YouTube channel to watch it!

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Attend to “Sickle-Cell Disease (SCD): present and future perspectives” the online course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

Attend to “Sickle-Cell Disease (SCD): present and future perspectives” the online course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

2022-10-25

The course, that will be held next 10th, 17th, 24th...

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The Thalassaemia International Federation 2021 Annual Report is now available!

The Thalassaemia International Federation 2021 Annual Report is now available!

2022-10-18

Visit the dedicated section on TIF's website to dowload it.

Read More

The Topic on Focus on AA and PNH for patients and their families will start next 23rd November!

The Topic on Focus on AA and PNH for patients and their families will start next 23rd November!

2022-10-18

A new comprehensive program organized with patients associations.

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Participate in the “X Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy"

Participate in the “X Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy"

2022-10-12

The course that will be addressed next 10th and 24th...

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Last call for EJP RD Research Mobility Fellowships!

Last call for EJP RD Research Mobility Fellowships!

2022-10-04

Participants should acquire new competences and knowledge related to their...

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CALL FOR PARTICIPANTS – 4 ERN-EuroBloodNet Preceptorships for Members and Affiliated Partners are available!

CALL FOR PARTICIPANTS – 4 ERN-EuroBloodNet Preceptorships for Members and Affiliated Partners are available!

2022-09-29

The costs for travel and accommodation of the elected participants...

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CALL FOR PARTICIPANTS – 5 New ERN-EuroBloodNet Preceptorships for Members and Affiliated Partners are available!

CALL FOR PARTICIPANTS – 5 New ERN-EuroBloodNet Preceptorships for Members and Affiliated Partners are available!

2022-09-29

The costs for travel and accommodation of the elected participants...

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CALL FOR PARTICIPANTS – New ERN-EuroBloodNet Preceptorships for Members and Affiliated Partners are available!

CALL FOR PARTICIPANTS – New ERN-EuroBloodNet Preceptorships for Members and Affiliated Partners are available!

2022-09-29

The costs for travel and accommodation of the elected participants...

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ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2022

ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2022

2022-09-29

A new edition of the educational program for people living...

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Do not miss the International Conference on Clinical Research Networks for Rare Diseases!

Do not miss the International Conference on Clinical Research Networks for Rare Diseases!

2022-09-27

The online meeting will be held next 1rst and 2nd...

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CALL FOR PARTICIPANTS – New edition of the Preceptorship on Rare Haemolytic Anaemia in Laboratories!

CALL FOR PARTICIPANTS – New edition of the Preceptorship on Rare Haemolytic Anaemia in Laboratories!

2022-09-26

Members and Affiliated Partners are invited to take part in...

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Submit your application to the EHA Clinical Research Training in Hematology before 15th November!

Submit your application to the EHA Clinical Research Training in Hematology before 15th November!

2022-09-26

Twenty early-career scientists will be selected to attend the course!

Read More

The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Barcelona!

The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Barcelona!

2022-09-26

Alanna Irving has joined the ERN-EuroBloodNet coordination team, based at...

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IRDiRC Announces The Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research

IRDiRC Announces The Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research

2022-09-22

The commitee involve a total of 11 experts from regulatory...

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OPEN CALL! Preceptorships on Thalassemia, Bone marrow failures and Rare Hereditary Hemolytic Anemias: Submit your applications before 20th September!

OPEN CALL! Preceptorships on Thalassemia, Bone marrow failures and Rare Hereditary Hemolytic Anemias: Submit your applications before 20th September!

2022-09-12

If you belong to a ERN-EuroBloodNet Member or Affiliated Partner...

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OPEN CALL! Preceptorships on Thalassaemia and Bone marrow failures: Submit your applications before 20th September!

OPEN CALL! Preceptorships on Thalassaemia and Bone marrow failures: Submit your applications before 20th September!

2022-09-06

Deadline to submit applications has been expanded. If you belong...

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The EJP RD ERN Research Training Workshops funding opportunity is now open!

The EJP RD ERN Research Training Workshops funding opportunity is now open!

2022-09-01

Researchers and clinicians affiliated to ERN- Full  Members or - Affiliated Partners in...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2022-08-31

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

Read More

The application period for the EHA Reseach Grants is opened!

The application period for the EHA Reseach Grants is opened!

2022-08-31

EHA Members or Guests are invited to apply before December...

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DEADLINE EXTENDED - Submit your applications to the 2 new ERN preceptorships before 6th September!

DEADLINE EXTENDED - Submit your applications to the 2 new ERN preceptorships before 6th September!

2022-08-30

Full Members and Affiliated Partners are invited to participate.

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The ERN-EuroBloodNet coordination team has been expanded with the new incorporation in Paris!

The ERN-EuroBloodNet coordination team has been expanded with the new incorporation in Paris!

2022-08-30

Adeline Gladieux has joined the ERN-EuroBloodNet coordination team, based at...

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Preceptorships, another good way of learning

Preceptorships, another good way of learning

2022-08-29

ERN Exchange Mobility Program, a unique opportunity to benefit from...

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The EJP RD Research Mobility Fellowships funding opportunity will open on October!

The EJP RD Research Mobility Fellowships funding opportunity will open on October!

2022-08-29

The call aims to support PhD students, postdocs, and medical...

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The nomination period of the EURORDIS Black Pearl Awards is opened again!

The nomination period of the EURORDIS Black Pearl Awards is opened again!

2022-08-28

If you have a star candidate, do not hesitate to...

Read More

The Topic on Focus on AA and PNH for patients and their families will start in November

The Topic on Focus on AA and PNH for patients and their families will start in November

2022-08-26

A new comprehensive program organized with patients associations will be...

Read More

Extension of ERN-EuroBloodNet Members’ Areas of Expertise

Extension of ERN-EuroBloodNet Members’ Areas of Expertise

2022-08-03

HCPs have the possibility to request an extension of their...

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The 3rd ERN-EuroBloodNet Progress meeting took place on 19th May with more than 100 participants thanks to all!

The 3rd ERN-EuroBloodNet Progress meeting took place on 19th May with more than 100 participants thanks to all!

2022-07-29

The meeting has promoted the interactions among stakeholders for new...

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CALL FOR PARTICIPANTS- Submit your applications to the 2 new ERN preceptorships before 20th August!

CALL FOR PARTICIPANTS- Submit your applications to the 2 new ERN preceptorships before 20th August!

2022-07-26

Full Members and Affiliated Partners are invited to participate.

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The 4th Progress Meeting will be held next 7th November!

The 4th Progress Meeting will be held next 7th November!

2022-07-24

Block your agenda to attend the ERN-EuroBloodNet's event of the...

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IRDiRC's Scientific Committee (DSC) is open to a new Member!

IRDiRC's Scientific Committee (DSC) is open to a new Member!

2022-07-18

Clinicians and experts in genetics, genomics, bioinformatics, molecular diagnostics, and biochemistry  are...

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The update of the State of Play Report of IRDiRC has been published!

The update of the State of Play Report of IRDiRC has been published!

2022-07-05

Visit the IRDiRC website for further information on scientific articles...

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ERN-EuroBloodNet at the EHA2022 Hybrid Congress 2022

ERN-EuroBloodNet at the EHA2022 Hybrid Congress 2022

2022-07-03

View the sessions available at the EHA2022 Congress platform to...

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The ERN EuroBloodNet has presented 4 poster at the European Conference on Rare Diseases &Orphan Products (ECRD 2022)

The ERN EuroBloodNet has presented 4 poster at the European Conference on Rare Diseases &Orphan Products (ECRD 2022)

2022-07-01

Important achievements of the ERN-EuroBloodNet sown at the 11th Edition

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The EJP RD Innovation Management Toolbox (IMT) is now available!

The EJP RD Innovation Management Toolbox (IMT) is now available!

2022-06-30

The IMT, the library of translational medicine resources on Rare...

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The EJP RD webinar on Composite endpoints including patient relevant endpoints (Quality of Life) is now available!

The EJP RD webinar on Composite endpoints including patient relevant endpoints (Quality of Life) is now available!

2022-06-27

Visit the EJP RD YouTube channel to watch it!

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ERN-EuroBloodNet at the ERICA 2nd General Assembly 20-22 June 2022, Bologna, Italy

ERN-EuroBloodNet at the ERICA 2nd General Assembly 20-22 June 2022, Bologna, Italy

2022-06-24

The ERN-EuroBloodNet is co-leader of the ERICA WP3, Patient-Centered Research...

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Do not miss the EJP RD second paediatric expert patients training workshop!

Do not miss the EJP RD second paediatric expert patients training workshop!

2022-06-22

The event will take place in Lyon, France on July...

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ERN-EuroBloodNet and the people living with SCD is celebrating the World Sickle Cell Day 2022!

ERN-EuroBloodNet and the people living with SCD is celebrating the World Sickle Cell Day 2022!

2022-06-17

This year together with people living with SCD we created...

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Do not miss the 12th edition of the International Symposium on Hodgkin Lymphoma!

Do not miss the 12th edition of the International Symposium on Hodgkin Lymphoma!

2022-06-16

The hybrid conference will be held in Cologne, Germany, from...

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Register for the workshop addressing "Ethics and regulatory considerations for ERN Data Access Committee members"

Register for the workshop addressing "Ethics and regulatory considerations for ERN Data Access Committee members"

2022-06-08

The online workshop is co-organized by the EJP RD and...

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The ERN-EuroBloodNet will be present at the EHA2022!

The ERN-EuroBloodNet will be present at the EHA2022!

2022-06-03

Do not miss the opportunity to stay updated on the...

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Clinical Patient Management System for Virtual diagnosis

Clinical Patient Management System for Virtual diagnosis

2022-06-02

Be part of the CPMS experts to obtain and provide...

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Update on Hemochromatosis: “Hemochromatosis classification: update and recommendations by the BIOIRON Society”

Update on Hemochromatosis: “Hemochromatosis classification: update and recommendations by the BIOIRON Society”

2022-06-01

The manuscript of the working group of the International Society...

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The 11th European Conference on Rare Diseases & Orphan Products will be held on June!

The 11th European Conference on Rare Diseases & Orphan Products will be held on June!

2022-05-22

Perform your registration for the event coordinated by EURORDIS and...

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The 7th RE(ACT) Congress and 5th IRDiRC Conference will be held next year!

The 7th RE(ACT) Congress and 5th IRDiRC Conference will be held next year!

2022-05-19

The event represents an exciting program with outstanding speakers and...

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Perform you registration to the EJP RD's ERN Workshops entitled Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases" before 31st May 2022!

Perform you registration to the EJP RD's ERN Workshops entitled Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases" before 31st May 2022!

2022-05-18

The face-to-face workshop will take place over two days on July 4th -...

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ERN-EuroBloodNet Coordination team has been expanded with the new CPMS and e-Learning manager!

ERN-EuroBloodNet Coordination team has been expanded with the new CPMS and e-Learning manager!

2022-05-15

Christel Buelens is based in Hôpital ERASME, together with ERN-EuroBloodNet...

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The EJP RD Training Workshop titled "Genetic Biobanks for Rare Disease Research" will be held next 14th and 15th June!

The EJP RD Training Workshop titled "Genetic Biobanks for Rare Disease Research" will be held next 14th and 15th June!

2022-05-15

Registration closes on May 29th, and those selected to participate...

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We invite you to attend to the 3rd Meeting of Children's Hospital of Philadelphia with Aghia Sophia Children's Hospital

We invite you to attend to the 3rd Meeting of Children's Hospital of Philadelphia with Aghia Sophia Children's Hospital

2022-05-15

Registration for the 2022 edition is still open!

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CALL FOR PARTICIPANTS – Preceptorship on Rare Haemolytic Anaemia in Laboratories!

CALL FOR PARTICIPANTS – Preceptorship on Rare Haemolytic Anaemia in Laboratories!

2022-05-11

Members and Affiliated Partners are invited to take part to...

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Available videos on the experience of the SCD Patients Educational Session at ASCAT 2022

Available videos on the experience of the SCD Patients Educational Session at ASCAT 2022

2022-05-01

We invite you to visit the EuroBloodNet's Youtube Channel to...

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The 18th International Symposium on Amyloidosis will be held in Heidelberg next September!

The 18th International Symposium on Amyloidosis will be held in Heidelberg next September!

2022-05-01

The program of the 18th edition will cover all types...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2022-04-30

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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The ECRD2022 registry is still open!

The ECRD2022 registry is still open!

2022-04-28

The 11th edition will be celebrated next summer, 27th June -...

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Update on prenatal diagnosis of β-thalassemia: “Early prenatal diagnosis of Hb Lepore Boston-Washington and β-thalassemia on fetal celomatic DNA”

Update on prenatal diagnosis of β-thalassemia: “Early prenatal diagnosis of Hb Lepore Boston-Washington and β-thalassemia on fetal celomatic DNA”

2022-04-27

The study shows that prenatal diagnosis of β-thalassemia and Hb...

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ERN-EuroBloodNet will celebratate the 2022 World Sickle Cell Day!

ERN-EuroBloodNet will celebratate the 2022 World Sickle Cell Day!

2022-04-25

Are you living with SCD as patient or caregiver and...

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Are you going to attend some of the conferences organized by the European School of Haematology?

Are you going to attend some of the conferences organized by the European School of Haematology?

2022-04-19

Six different conferences on the haematological field are available for...

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The ECRD2022 poster submission deadline has been extended to 21st April 2022!

The ECRD2022 poster submission deadline has been extended to 21st April 2022!

2022-03-31

The 11th edition will be celebrated next summer, 27th June -...

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An article focused on the Patient (Advocate)’s Perspective on Biosimilars has been recently published!

An article focused on the Patient (Advocate)’s Perspective on Biosimilars has been recently published!

2022-03-28

Maria Piggin, the ePAG representative of Paroxysmal Nocturnal Haemoglobinuria (PNH Support) in...

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Explore the Rare Diseases Clinical Trials Toolbox!

Explore the Rare Diseases Clinical Trials Toolbox!

2022-03-22

The Rare Diseases Clinical Trials Toolbox has been developed as a practical aid...

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Participate in the MOOC (Massive Open Online Course) "Diagnosing Rare Diseases: from the Clinic to Research and back"

Participate in the MOOC (Massive Open Online Course) "Diagnosing Rare Diseases: from the Clinic to Research and back"

2022-03-22

Registrations to this course are free and open!

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The EJP RD ERN Research Training Workshops funding opportunity is now open!

The EJP RD ERN Research Training Workshops funding opportunity is now open!

2022-03-22

The costs for the workshop organization will be covered up to...

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The ERN-EuroBloodNet New Members Welcome Meeting has been held on 21st March

The ERN-EuroBloodNet New Members Welcome Meeting has been held on 21st March

2022-03-21

More than 70 participants from the 36 new ERN-EuroBloodNet Members...

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All 24 ERNs united to help Ukrainian people with rare diseases

All 24 ERNs united to help Ukrainian people with rare diseases

2022-03-15

All 24 European Reference Networks (ERNs) launch a dedicated website...

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Kick-off meeting of ERICA WP3 Patient Centred Expert Working Group

Kick-off meeting of ERICA WP3 Patient Centred Expert Working Group

2022-03-10

On the 8th and 10th of March it has been...

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"Training for patient representatives and advocates on leadership and communication skills" is the international course proposed by the EJP RD!

"Training for patient representatives and advocates on leadership and communication skills" is the international course proposed by the EJP RD!

2022-03-09

The in-person training will take place from November 10th - 11th at ISS in Rome, Italy.

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The International Summer School on Rare Disease Registries and FAIRification of Data registry will take place next September!

The International Summer School on Rare Disease Registries and FAIRification of Data registry will take place next September!

2022-03-09

The 5-day training programme has been organised by Istituto Superiore di Sanità...

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Registration to the EJP RD's ERN Workshop on "Translational research on bone impairment in rare diseases" is now open!

Registration to the EJP RD's ERN Workshop on "Translational research on bone impairment in rare diseases" is now open!

2022-03-08

The training workshop is free of charge and consists of interactive...

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EJP RD has launched the FAIRopoly!

EJP RD has launched the FAIRopoly!

2022-03-07

The game illustrates the FAIRification steps followed by the ERNs...

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The International Rare Diseases Research Consortium (IRDiRC) has released an introductory video!

The International Rare Diseases Research Consortium (IRDiRC) has released an introductory video!

2022-03-04

The video has been released on the occasion of Rare...

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Do not miss the opportunity to attend to HÄMATOLOGIE HEUTE symposium!

Do not miss the opportunity to attend to HÄMATOLOGIE HEUTE symposium!

2022-03-03

The 8th edition of the symposium will be held on-site...

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Revisiting classification of ß-thalassemia: “Random Forest Clustering Identifies Three Subgroups of ß-Thalassemia with Distinct Clinical Severity”

Revisiting classification of ß-thalassemia: “Random Forest Clustering Identifies Three Subgroups of ß-Thalassemia with Distinct Clinical Severity”

2022-03-01

The work shows that patients with ß-thalassemia can be clustered...

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ERN-EuroBloodNet supports Rare Disease day 2022

ERN-EuroBloodNet supports Rare Disease day 2022

2022-02-28

Today, 28th February, the ERN-EuroBloodNet wants to contribute to the...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2022-02-28

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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EJ PRD has announced the official launch of their Instagram account

EJ PRD has announced the official launch of their Instagram account

2022-02-25

On Rare Disease Day 2022, Prof. Bloom will take over...

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"Recommendations for Diagnosis and Treatment of Methemoglobinemia" has been published with the acknowledgement of EHA and ERN-EuroBloodNet!

"Recommendations for Diagnosis and Treatment of Methemoglobinemia" has been published with the acknowledgement of EHA and ERN-EuroBloodNet!

2022-02-22

The manuscript is the first published joint project between ERN-EuroBloodNet...

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Registry to the EHA2022 Congress is now open!

Registry to the EHA2022 Congress is now open!

2022-02-22

The first hybrid edition of the EHA Congress will be...

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The manuscript with the results of the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas has been published!

The manuscript with the results of the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas has been published!

2022-02-08

ERN-EuroBloodNet in collaboration with the multidisciplinary team of Institut Curie dealing with...

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Participate in the "Training on strategies to foster solutions of undiagnosed rare disease cases" course!

Participate in the "Training on strategies to foster solutions of undiagnosed rare disease cases" course!

2022-02-04

The online event will take place over three days from on April 11th - 13th.

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The EJP RD has stablished a partnership with the Critical Path Institute

The EJP RD has stablished a partnership with the Critical Path Institute

2022-02-02

Both organizations will support the creation of an interoperable global...

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We are glad to announce that ERN-EuroBloodNet welcomes 36 new full Members!

We are glad to announce that ERN-EuroBloodNet welcomes 36 new full Members!

2022-02-02

We now cover 24 out of 27 EU countries, with...

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SCD Patients’ Educational Session at ASCAT 2022 January

SCD Patients’ Educational Session at ASCAT 2022 January

2022-02-01

The third edition of SCD Patients Therapeutic Educational Session at...

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Participate in The Black Pearl Awards 2022!

Participate in The Black Pearl Awards 2022!

2022-01-31

The online ceremony will be held on Tuesday, 8th February...

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A School Toolkit for explaining living with a Rare Disease to young children has been launched!

A School Toolkit for explaining living with a Rare Disease to young children has been launched!

2022-01-27

The book, titled "A Friendship Story", and the lesson plan...

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ERN-EuroBloodNet Topic on Focus on Bone Marrow Failures Syndromes for health professionals

ERN-EuroBloodNet Topic on Focus on Bone Marrow Failures Syndromes for health professionals

2022-01-20

An educational online program on Bone Marrow Failures Syndromes organized...

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A new action for the development of Guidelines on Adult Burkitt Lymphoma has been lauched in ERN-EuroBloodNet!

A new action for the development of Guidelines on Adult Burkitt Lymphoma has been lauched in ERN-EuroBloodNet!

2022-01-19

Meet the Expert Panel and patient representative involved in the...

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Participate in the "Training on strategies to foster solutions of undiagnosed rare disease cases" course!

Participate in the "Training on strategies to foster solutions of undiagnosed rare disease cases" course!

2022-01-16

The training will take place over three days from on April 3rd - 5th.

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Participate in the new Share4Rare study on health-related quality of life in people living with rare diseases!

Participate in the new Share4Rare study on health-related quality of life in people living with rare diseases!

2022-01-16

Adult patients or caregivers of pediatric patients are invited to...

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Accelerating Clinical Trials in the EU (ACT EU): The new initiative to optimise the environment for clinical research in Europe!

Accelerating Clinical Trials in the EU (ACT EU): The new initiative to optimise the environment for clinical research in Europe!

2022-01-13

The initiative has been created by the European Commission (EC),...

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Apply to the EJ PRD Joint Transnational Call 2022!

Apply to the EJ PRD Joint Transnational Call 2022!

2021-12-31

Submit your pre-proposal before 16th February!

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ERN-EuroBloodNet at the 63RD ASH Annual Meeting and Exposition!

ERN-EuroBloodNet at the 63RD ASH Annual Meeting and Exposition!

2021-12-30

Two projects carried on in ERN-EuroBloodNet have been presented during...

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ASCAT 2022 will be held next January!

ASCAT 2022 will be held next January!

2021-12-29

The 17th edition is co-organized by the European Heamatology Association...

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EURORDIS has opened the Patient Advocate Fee-Waiver Programme!

EURORDIS has opened the Patient Advocate Fee-Waiver Programme!

2021-12-29

The selected applications will obtain fee waivers to attend the...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2021-12-29

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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Topic on Focus on Sickle Cell Disease for patients and their families

Topic on Focus on Sickle Cell Disease for patients and their families

2021-12-28

An educational online program on Sickle Cell Disease for patients...

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Happy Holidays and Happy New Year 2022!

Happy Holidays and Happy New Year 2022!

2021-12-23

From the ERN-EuroBloodNet Coordination team, we send you our best...

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EJ PRD has announced the official launch of the Joint Transnational Call 2022!

EJ PRD has announced the official launch of the Joint Transnational Call 2022!

2021-12-15

A funding opportunity for research projects on the development of new analytic tools...

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Participate in The Black Pearl Awards 2022!

Participate in The Black Pearl Awards 2022!

2021-12-15

The online ceremony will be held on Tuesday, 8th February...

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EJP RD is glad to announce the upcoming launch on December 14th of the fourth EJP RD Joint Transnational Call (JTC) 2022!

EJP RD is glad to announce the upcoming launch on December 14th of the fourth EJP RD Joint Transnational Call (JTC) 2022!

2021-12-14

The call aims to enable scientists in different countries to build...

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Registration to the next EJP RD's ERN Workshop "Contemporary outcome measures in neuromuscular diseases" is open!

Registration to the next EJP RD's ERN Workshop "Contemporary outcome measures in neuromuscular diseases" is open!

2021-12-09

The hybrid event (in-person on site and online by videoconference) will take place over two days...

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The results of two projects promoted by ERN-EuroBloodNet will be presented at the 63RD ASH Annual Meeting and Exposition !

The results of two projects promoted by ERN-EuroBloodNet will be presented at the 63RD ASH Annual Meeting and Exposition !

2021-12-09

Do not miss the opportunity to stay updated on the...

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Do not miss the webinar focused on Domain specific Common Data Elements (DCDEs) Curation!

Do not miss the webinar focused on Domain specific Common Data Elements (DCDEs) Curation!

2021-12-07

It is co-organized by EJP RD, the European Rare Disease...

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EJP RD invites you to participate in the workshop on "Endocrine cancer: A challenge in adults and children”

EJP RD invites you to participate in the workshop on "Endocrine cancer: A challenge in adults and children”

2021-12-07

The in-person event will take place on May 4th, 2022...

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Join the next Clinical Patient Management System Webinar led by the European Commission!

Join the next Clinical Patient Management System Webinar led by the European Commission!

2021-12-07

Do you need expert’s advice on rare diseases cases? Do...

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EHA & ERN-EuroBloodNet Spotlight on Castleman Disease

EHA & ERN-EuroBloodNet Spotlight on Castleman Disease

2021-11-30

An educational online program on Castleman Disease organized by EHA...

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The 2nd edition of the ERN-EuroBloodNet Progress meeting took place on 28th October!

The 2nd edition of the ERN-EuroBloodNet Progress meeting took place on 28th October!

2021-11-30

Thank you so much to the almost 140 attendants for...

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Participate in the EURORDIS Photo Award!

Participate in the EURORDIS Photo Award!

2021-11-18

Send your photo before 16th January 2022!

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The EJP RD Joint Transnational Call 2022 has been pre-announced!

The EJP RD Joint Transnational Call 2022 has been pre-announced!

2021-11-16

The call aims to enable scientists in different countries to...

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Join the new Working Group on MedTech for Rare Diseases stablished by IRDiRC together with the University of Twente!

Join the new Working Group on MedTech for Rare Diseases stablished by IRDiRC together with the University of Twente!

2021-11-15

Interested candidates can submit their application to the Scientific Secretariat before 14th...

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Last days to participate in the Share4Rare Call4Projects 2022 for patient-centred research initiatives

Last days to participate in the Share4Rare Call4Projects 2022 for patient-centred research initiatives

2021-11-02

Submit your proposal before 10th December 2021 at 17:00 pm...

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Attend to “IX Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy

Attend to “IX Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy

2021-10-29

The course that will be addressed next 11th and 25th...

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Get EJP RD’s support on your application for the Horizon Europe Call for Proposals: Development of new effective therapies for rare diseases

Get EJP RD’s support on your application for the Horizon Europe Call for Proposals: Development of new effective therapies for rare diseases

2021-10-21

Visit the dedicated section on the EJP RD website to...

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Contribute to ERICA answering the Survey created by the Working Package team of Translation and Innovation!

Contribute to ERICA answering the Survey created by the Working Package team of Translation and Innovation!

2021-10-20

They invite you to complete the Survey for exploring research...

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The EJP RD Research Mobility Fellowships funding opportunity is now open until November 28th!

The EJP RD Research Mobility Fellowships funding opportunity is now open until November 28th!

2021-10-18

The call aims to support PhD students, Postdocs and medical...

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Two new articles published on the SCD Patients’ Priorities Blog

Two new articles published on the SCD Patients’ Priorities Blog

2021-10-15

Read the two interesting articles published on the blog: “Why...

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Attend the next webinar of "More of Sickle Cell Disease patients voices" organized by Novartis focused on The Hospital Life!

Attend the next webinar of "More of Sickle Cell Disease patients voices" organized by Novartis focused on The Hospital Life!

2021-10-14

The webinar will take place online on October 19th, 2021...

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EJP RD ERN Research Training Workshops Funding Opportunity: Deadline extended to October 22nd!

EJP RD ERN Research Training Workshops Funding Opportunity: Deadline extended to October 22nd!

2021-10-11

The goal of the workshops is to train researchers and...

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GenoMed4All – Patient Engagement e-Workshop

GenoMed4All – Patient Engagement e-Workshop

2021-09-30

GenoMed4All – A meeting with Myelodysplastic Syndromes, Multiple Myeloma and...

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The project "Connecting EuroBloodNet II" has recently finished with the identification of a new approach for the efficient use of CPMS and the development of ERN-EuroBloodNet’s e-learning environment

The project "Connecting EuroBloodNet II" has recently finished with the identification of a new approach for the efficient use of CPMS and the development of ERN-EuroBloodNet’s e-learning environment

2021-09-29

Actions initiated will be continued through "Connecting EuroBloodNet III" aiming...

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The next EJP RD Resource Webinar is dedicated to European Paediatric Translational Research Infrastructure!

The next EJP RD Resource Webinar is dedicated to European Paediatric Translational Research Infrastructure!

2021-09-21

The webinar will be held next October 14th. Do not...

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The European Joint Programme on Rare Diseases has launched the ERN Research Training Workshops!

The European Joint Programme on Rare Diseases has launched the ERN Research Training Workshops!

2021-09-07

The goal of the workshops is to train researchers and...

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First article on the International Hemoglobinopathy Research Network (INHERENT) has been published with the endorsement of ERN-EuroBloodNet

First article on the International Hemoglobinopathy Research Network (INHERENT) has been published with the endorsement of ERN-EuroBloodNet

2021-08-26

“The International Hemoglobinopathy Research Network (INHERENT): an international initiative to...

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The 1st ERN-EuroBloodNet Progress meeting took place on 20th May with more than 140 participants thanks to all!

The 1st ERN-EuroBloodNet Progress meeting took place on 20th May with more than 140 participants thanks to all!

2021-08-05

The meeting has promoted the interactions among stakeholders for new...

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The National Organization for Rare Diseases (NORD) is organizing the NORD Summit 2021

The National Organization for Rare Diseases (NORD) is organizing the NORD Summit 2021

2021-08-05

This year the conference will take place on October, over...

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Participate in “Retos y Oportunidades en el Seguimiento a Largo Plazo del Paciente Oncohematológico” the online course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

Participate in “Retos y Oportunidades en el Seguimiento a Largo Plazo del Paciente Oncohematológico” the online course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

2021-08-04

The course that will be addressed next 3rd, 10th, 17th...

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The two ERN-EuroBloodNet Webinars programs for Patients and Patients Organizations restart after the summer break!

The two ERN-EuroBloodNet Webinars programs for Patients and Patients Organizations restart after the summer break!

2021-08-04

Check the upcoming webinars and register to receive the link!

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ERN-EuroBloodNet webinars for health professionals will continue in September!

ERN-EuroBloodNet webinars for health professionals will continue in September!

2021-08-03

After the summer break, four webinar programs will resume. Have...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2021-08-01

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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Apply to the 5th edition of the Clinical Research Training in Hematology organized by the European Hematology Association!

Apply to the 5th edition of the Clinical Research Training in Hematology organized by the European Hematology Association!

2021-07-30

The call for application is open until the 2nd of...

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The nomination period of the EURORDIS Black Pearl Awards is open!

The nomination period of the EURORDIS Black Pearl Awards is open!

2021-07-23

If you have a star candidate of the rare disease...

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Visit EuroBloodNet’s EDU YouTube channel to see newly added 25 EuroBloodNet webinars!

Visit EuroBloodNet’s EDU YouTube channel to see newly added 25 EuroBloodNet webinars!

2021-07-17

Sessions from the different ERN-EuroBloodNet Webinars programs are available on...

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GATA2-related Myelodysplastic Syndromes workshop is a new training activity offered by the EJP RD

GATA2-related Myelodysplastic Syndromes workshop is a new training activity offered by the EJP RD

2021-07-16

The workshop, that will be held on September 30th - October...

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Attend to “Retos y Oportunidades en el Seguimiento a Largo Plazo del Paciente Oncohematológico” the course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

Attend to “Retos y Oportunidades en el Seguimiento a Largo Plazo del Paciente Oncohematológico” the course in Spanish organized by the ERN-EuroBloodNet Member Hospital Universitari Vall d'Hebron

2021-06-30

The course that will be addressed next 3rd, 10th, 17th...

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Next Thursday Webinar "CNS and/or Ocular lymphoma" - Do not miss it!

Next Thursday Webinar "CNS and/or Ocular lymphoma" - Do not miss it!

2021-06-30

The webinar provided by Dr Carole Soussain (Institut Curie) will...

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"Quality assurance, variant interpretation and data management in the NGS diagnostics era" a new training activity proposed by the EJP RD

"Quality assurance, variant interpretation and data management in the NGS diagnostics era" a new training activity proposed by the EJP RD

2021-06-21

The course will build on expertise gained by EuroGentest and help in...

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The International Summer School on Rare Disease Registries and FAIRification call is opened until 11th July 2021!

The International Summer School on Rare Disease Registries and FAIRification call is opened until 11th July 2021!

2021-06-21

The event is organised by Istituto Superiore di Sanità (ISS) in close...

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ERN-EuroBloodNet has created a poster for celebrating the 2021 World Sickle Cell Day!

ERN-EuroBloodNet has created a poster for celebrating the 2021 World Sickle Cell Day!

2021-06-17

Expand the section to access the poster with the direct...

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ERN-EuroBloodNet has created a poster for celebrating the World Sickle Cell Day!

ERN-EuroBloodNet has created a poster for celebrating the World Sickle Cell Day!

2021-06-17

Expand the section to access the poster with the direct...

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Strategy Meeting: Alignment of national rare diseases strategies with the EJP RD

Strategy Meeting: Alignment of national rare diseases strategies with the EJP RD

2021-06-14

The fully online meeting will take place on 8th July...

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The Assessment of the EU Member States’ rules on health data in the light of General Data Protection Regulation has been published by the European Commission

The Assessment of the EU Member States’ rules on health data in the light of General Data Protection Regulation has been published by the European Commission

2021-05-31

The study goes on to highlight that co-operation between the...

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The ERICA kick-off meeting has been held!

The ERICA kick-off meeting has been held!

2021-05-28

The different working packages have been presented on the last...

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The first article on the SCD Patients’ Priorities Blog has been published!

The first article on the SCD Patients’ Priorities Blog has been published!

2021-05-28

The Sickle Cell Disease Patients' Priorities Blog has been recently...

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EJP RD's ERN Workshop: "Clinical Research: The Basics & Beyond"

EJP RD's ERN Workshop: "Clinical Research: The Basics & Beyond"

2021-05-21

The workshop is open by prior registration and selection to medical...

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First webinar session of the Topic on Focus for Patients Organizations on Cutaneous Lymphoma is now available

First webinar session of the Topic on Focus for Patients Organizations on Cutaneous Lymphoma is now available

2021-05-03

The video of the first session of the Topic on...

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Published on EuroBloodNet's Edu YouTube channel: Educational videos for people living with SCD!!

Published on EuroBloodNet's Edu YouTube channel: Educational videos for people living with SCD!!

2021-04-23

Videos of the SCD Patients' Educational Session at ASCAT 2020...

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The Sickle Cell Disease Patients' Priorities Blog has been launched!

The Sickle Cell Disease Patients' Priorities Blog has been launched!

2021-04-19

We invite everyone with sickle cell disease to send us...

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Registration for Topic on Focus for Patients’ Organization on Cutaneous Lymphoma is open!

Registration for Topic on Focus for Patients’ Organization on Cutaneous Lymphoma is open!

2021-04-09

The comprehensive webinar program on CL targeting patients’ associations will...

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The analysis of the first period of ERNs progress has been published!

The analysis of the first period of ERNs progress has been published!

2021-04-01

European Reference Networks: challenges and opportunities is the name of...

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The importance of Next Generation Sequencing for the diagnosis of Rare Anemia Disorders

The importance of Next Generation Sequencing for the diagnosis of Rare Anemia Disorders

2021-04-01

A study under the name “Usefulness of NGS for Diagnosis...

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Newborn screening for sickle cell disease in Belgium

Newborn screening for sickle cell disease in Belgium

2021-03-28

A request from Belgian SCD patients advocates’ group

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Topic on Focus: Thrombotic Microangiopathies webinars received official CME accreditation!

Topic on Focus: Thrombotic Microangiopathies webinars received official CME accreditation!

2021-03-17

Webinar Program for health professionals named “Topic on Focus: Thrombotic...

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The EJP RD Research Mobility Fellowships funding opportunity is now open!

The EJP RD Research Mobility Fellowships funding opportunity is now open!

2021-03-15

The call aims to support PhD students, Postdocs and medical...

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EJP RD call for Research Mobility Fellowships will open on 15th of March!

EJP RD call for Research Mobility Fellowships will open on 15th of March!

2021-03-10

The Research Mobility Fellowships aims to support PhD students, Postdocs...

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The 4 coordinating onco-ERNs have expressed interest to continue the collaboration between the ERNs and the UK

The 4 coordinating onco-ERNs have expressed interest to continue the collaboration between the ERNs and the UK

2021-03-03

The letter called "Continue the collaboration of rare cancers with...

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ERN-EuroBloodNet lightening the Verona Arena for the International Rare Disease Day

ERN-EuroBloodNet lightening the Verona Arena for the International Rare Disease Day

2021-03-01

Domenico Girelli involved at the event representing the ERN-EuroBloodNet

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The EJP RD Rare Disease Day Video is online!

The EJP RD Rare Disease Day Video is online!

2021-03-01

Watch EJP RD contributors answer the web's most search questions...

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Advances in Prenatal Diagnosis of monogenic diseases : “Coelocentesis”

Advances in Prenatal Diagnosis of monogenic diseases : “Coelocentesis”

2021-02-26

"Embryo-fetal erythroid cell selection from celomic fluid allows earlier prenatal...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2021-02-26

Subscribe to the newsletter and follow us on Twitter, LinkedIn,...

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New comprehensive webinar programs targeting patients or patients’ organizations are coming

New comprehensive webinar programs targeting patients or patients’ organizations are coming

2021-02-26

Topic on Focus on Cutaneous Lymphoma (CL) for POs and...

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Join the Annual Convention on Rare Diseases - Padova with the participation of ERN-EuroBloodNet!

Join the Annual Convention on Rare Diseases - Padova with the participation of ERN-EuroBloodNet!

2021-02-17

On the occassion of Rare Disease Day 2021, the Department of...

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The online registration for Topic on Focus: Thrombotic Microangiopathies webinars is open!

The online registration for Topic on Focus: Thrombotic Microangiopathies webinars is open!

2021-02-09

Webinar Program for health professionals named “Topic on Focus: Thrombotic...

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ERN-EuroBloodNet European Mapping of Transcranial Doppler for children with Sickle Cell Disease - Contribute until 22nd February!

ERN-EuroBloodNet European Mapping of Transcranial Doppler for children with Sickle Cell Disease - Contribute until 22nd February!

2021-02-08

ERN-EuroBloodNet aims to evaluate the availability of Transcranial Doppler for...

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The EJP-RD ERN Research Training Workshops Call is now open!

The EJP-RD ERN Research Training Workshops Call is now open!

2021-02-02

The goal of the proposed workshops should be to train researchers and clinicians affiliated...

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New EuroBloodNet’s webinar for health professionals Topic on Focus: Thrombotic Microangiopathies starts the 3d of March!

New EuroBloodNet’s webinar for health professionals Topic on Focus: Thrombotic Microangiopathies starts the 3d of March!

2021-01-27

Webinar Program for health professionals named “Topic on Focus: Thrombotic...

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EuroBloodNet’s initiatives for Cutaneous Lymphoma community in 2020

EuroBloodNet’s initiatives for Cutaneous Lymphoma community in 2020

2021-01-26

In 2020 EuroBloodNet has initiated several important activities and initiatives...

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Update on the Establishment of the European Network of Sickle Cell Disease Patients Organizations

Update on the Establishment of the European Network of Sickle Cell Disease Patients Organizations

2021-01-24

Belgium has elected its National Representatives

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Attend the EJP RD Information Webinar for the JTC2021

Attend the EJP RD Information Webinar for the JTC2021

2021-01-22

The webinar will take place online on February 2nd, 2021 3:00 - 4:30pm...

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4th ERN-EuroBloodNet Board of Network meeting took place 22nd of October with more than 120 participants! Check out the presentations of the meeting!

4th ERN-EuroBloodNet Board of Network meeting took place 22nd of October with more than 120 participants! Check out the presentations of the meeting!

2021-01-01

ERN-EuroBloodNet meeting represented the perfect opportunity to share with the...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2020-12-31

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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EURORDIS Recommendations to achieve a mature ERN system in 2030

EURORDIS Recommendations to achieve a mature ERN system in 2030

2020-12-30

The paper, and the accompanying Policy Brief, reviews progress achieved...

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The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Paris!

The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Paris!

2020-12-21

Léa MARGOT has joined the ERN-EuroBloodNet coordination team, based at...

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The EJP RD has launched an Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations!

The EJP RD has launched an Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations!

2020-12-16

The European Joint Programme on Rare Diseases (EJP RD) will...

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The 5th webinar of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

The 5th webinar of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

2020-12-14

Visit the EuroBloodNet EDU YouTube channel to watch the 5th...

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Visit EuroBloodNet’s EDU YouTube channel to see newly added 5 EuroBloodNet Thursday webinars!

Visit EuroBloodNet’s EDU YouTube channel to see newly added 5 EuroBloodNet Thursday webinars!

2020-12-07

Another 5 recorded sessions from the EuroBloodNet Thursday Webinars program...

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Important change in the webinar program Topic on Focus: Cutaneous Lymphoma

Important change in the webinar program Topic on Focus: Cutaneous Lymphoma

2020-11-16

The 14th of December will take place the last Topic...

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The Project Genomics and Personalized Medicine for all though Artificial Intelligence in Haematological Diseases (GENOMED4ALL) under grant preparation phase, counts with the participation of multiple ERN-EuroBloodNet members and experts

The Project Genomics and Personalized Medicine for all though Artificial Intelligence in Haematological Diseases (GENOMED4ALL) under grant preparation phase, counts with the participation of multiple ERN-EuroBloodNet members and experts

2020-11-09

GENOMED4ALL will make use of the existing infrastructures and initiatives,...

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Attend to “VIII Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy

Attend to “VIII Course of Eritropathology” organized by the Catalan Society of Hematology and Hemotherapy

2020-11-06

The course that will be addressed next 12th and 26th...

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European Rare dIsease research Coordination and support Action (ERICA) Project, has been evaluated positively, with the involvement of the 24 ERNs for building on the strength of the individual ERNs and create a platform that integrates research and innovation capacity

European Rare dIsease research Coordination and support Action (ERICA) Project, has been evaluated positively, with the involvement of the 24 ERNs for building on the strength of the individual ERNs and create a platform that integrates research and innovation capacity

2020-11-03

ERICA will promote inter-ERN research activities and establish firm collaborative...

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ERN-EuroBloodNet repository of Clinical Practice Guidelines and Other Clinical Decision Making Tools are searchable at the new website section!

ERN-EuroBloodNet repository of Clinical Practice Guidelines and Other Clinical Decision Making Tools are searchable at the new website section!

2020-11-01

A total of 117 GPGs and other CDMTs have been...

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Sickle Cell Disease patients and parents’ patients Educational Session at ASCAT 2020, a joint project of ERN-EuroBloodNet, ASCAT and BSH

Sickle Cell Disease patients and parents’ patients Educational Session at ASCAT 2020, a joint project of ERN-EuroBloodNet, ASCAT and BSH

2020-11-01

The SCD Patient Educational Session at ASCAT has provided for...

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Contribute to the ERN-EuroBloodnet European Mapping of Diagnostic Procedures: Intraocular Lymphomas! Deadline Extended until 15th November!

Contribute to the ERN-EuroBloodnet European Mapping of Diagnostic Procedures: Intraocular Lymphomas! Deadline Extended until 15th November!

2020-10-15

ERN-EuroBloodNet is conducting an exercise to better know the prevalence...

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EJP RD has produced a Short guide on patient partnerships in rare diseases research projects

EJP RD has produced a Short guide on patient partnerships in rare diseases research projects

2020-10-06

This guide will support applicants to describe the role and...

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The European Commission together with the European Society of Intensive Care Medicine are supporting the EU healthcare systems and clinicians dealing with the COVID-19 pandemic on the front line

The European Commission together with the European Society of Intensive Care Medicine are supporting the EU healthcare systems and clinicians dealing with the COVID-19 pandemic on the front line

2020-10-06

European Commission, DG SANTE has developed a free training programme...

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Do not miss: How to diagnose and treat a nursling with hematologic abnormalities?, the webinar program organized by Vall d’Hebron Hospital member of ERN-EuroBloodNet

Do not miss: How to diagnose and treat a nursling with hematologic abnormalities?, the webinar program organized by Vall d’Hebron Hospital member of ERN-EuroBloodNet

2020-10-04

The webinar program is divided on 4 online sessions in...

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ERN-EuroBloodNet and EURORDIS working for the establishment of the European Network of Sickle Cell Disease Patients Organizations

ERN-EuroBloodNet and EURORDIS working for the establishment of the European Network of Sickle Cell Disease Patients Organizations

2020-09-29

Italy, France, Spain and Portugal, the first countries with stablished...

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The ERN-EuroBloodNet 4th Board of the Network meeting

The ERN-EuroBloodNet 4th Board of the Network meeting

2020-09-28

Next October will take place the 4th ERN-EuroBloodNet BoN ONLINE...

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Last advances in Congenital Dyserythropoietic Anemias

Last advances in Congenital Dyserythropoietic Anemias

2020-09-22

A review of Congenital Dyserythropoietic Anemias has been recently published...

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The 4th webinar of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

The 4th webinar of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

2020-09-18

EuroBloodNet's Topic on focus CL "CD30+lymphoproliferations" provided by Prof. Dr....

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Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!

Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!

2020-09-16

ERN-EuroBloodNet is conducting an exercise to better know the prevalence...

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ERN-EuroBloodNet ensures secure health data exchange of patients with rare hematological diseases thanks to eHealth Digital Service Infrastructure for the ERNs

ERN-EuroBloodNet ensures secure health data exchange of patients with rare hematological diseases thanks to eHealth Digital Service Infrastructure for the ERNs

2020-09-01

The European Commission together with the European Reference Netowrks set...

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After the summer break the webinars "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" start again!

After the summer break the webinars "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" start again!

2020-08-31

On Monday the 14th September at 5:00 pm (CEST) will...

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The EuroBloodNet Thursdays Webinars program restarts after the summer break!

The EuroBloodNet Thursdays Webinars program restarts after the summer break!

2020-08-31

Next Thursday 17th September with a session called “Genetic counselling...

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ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and COVID-19 patients gathers patients from 13 European countries

ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and COVID-19 patients gathers patients from 13 European countries

2020-08-26

The collaborative platform is an initiative conceived in the frame...

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The Thursdays Webinars sessions from the first semmester are published on EuroBloodNet’s website and EuroBloodNet EDU YouTube channel!

The Thursdays Webinars sessions from the first semmester are published on EuroBloodNet’s website and EuroBloodNet EDU YouTube channel!

2020-08-25

These eight webinars have been focused on cutting-edge advances in...

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Three new ERN-EuroBloodNet’s Thursdays Webinars sessions are available on our EuroBloodNet’s EDU YouTube Channel!

Three new ERN-EuroBloodNet’s Thursdays Webinars sessions are available on our EuroBloodNet’s EDU YouTube Channel!

2020-08-25

"Challenges in the management of HFE-related hemochromatosis" provided by Prof....

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Attend the next online meeting of the European Red Cell Society: “The Horizons in Red Cell Research” !

Attend the next online meeting of the European Red Cell Society: “The Horizons in Red Cell Research” !

2020-08-24

The next 11th September 2020 will take place the online...

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The first two ERN-EuroBloodNet’s Thursdays Webinars sessions are available on our EuroBloodNet’s EDU YouTube Channel!

The first two ERN-EuroBloodNet’s Thursdays Webinars sessions are available on our EuroBloodNet’s EDU YouTube Channel!

2020-08-21

“Management of relapsed/refractory Acute Lymphoblastic Leukaemia in Adult” provided by...

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Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!

Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!

2020-08-19

ERN-EuroBloodNet is conducting an exercise to better know the prevalence...

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The European Comission publishes the evaluation of EU regulations on orphan and paediatric medicines

The European Comission publishes the evaluation of EU regulations on orphan and paediatric medicines

2020-08-12

This is the first comprehensive evaluation since their adoption aiming...

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The first three webinars of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

The first three webinars of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

2020-08-12

EuroBloodNet's Topic on focus CL "Introduction to Cutaneous Lymphoma" provided...

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An upgraded version of the ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and COVID-19 patients has been released!

An upgraded version of the ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and COVID-19 patients has been released!

2020-08-01

New data elements have been added according to the evolution...

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Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!

Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!

2020-07-28

ERN-EuroBloodNet is conducting an exercise to better know the prevalence...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2020-07-28

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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Submit your nominations for the 10th edition EURORDIS Black Pearl Awards!

Submit your nominations for the 10th edition EURORDIS Black Pearl Awards!

2020-07-27

The awards categories and nomination criteria have been presented for...

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European Rare Blood Disorders Platform (ENROL) online Kick off meeting was successfully held last 2nd July with more 120 registered participants, thanks to all!

European Rare Blood Disorders Platform (ENROL) online Kick off meeting was successfully held last 2nd July with more 120 registered participants, thanks to all!

2020-07-24

ENROL has officially started 1st June 2020, conceived in the core of...

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The two first webinars of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

The two first webinars of the EuroBloodNet's Topic on Focus: Cutaneous Lymphoma program already available on EuroBloodNet's EDU YouTube channel!

2020-07-24

EuroBloodNet's Topic on focus CL "Introduction to Cutaneous Lymphoma" provided...

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Two new ERN reportages launched by the European Commission!

Two new ERN reportages launched by the European Commission!

2020-07-23

Two reportages have been launched by the European Commission to...

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Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!!!

Contribute to the ERN-EuroBloodNet European Mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas! Deadline extended until 15th November!!!

2020-07-20

ERN-EuroBloodNet is conducting an exercise to better know the prevalence...

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The first EuroBloodNet's Cutaneous Lymphoma Virtual Board online clinical meeting in CPMS has taken place!

The first EuroBloodNet's Cutaneous Lymphoma Virtual Board online clinical meeting in CPMS has taken place!

2020-07-14

The implementation of CPMS allows medical consultation across national borders

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EuroBloodNet's Topic on Focus: Introduction to Cutaneous Lymphoma webinar lead by Prof. Willemze available on our YouTube channel!

EuroBloodNet's Topic on Focus: Introduction to Cutaneous Lymphoma webinar lead by Prof. Willemze available on our YouTube channel!

2020-07-10

The first session of EuroBloodNet's Topic on Focus: Introduction to...

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Four new “One-page guide” documents to support the use of CPMS available at EuroBloodNet’s How to use CPMS section!

Four new “One-page guide” documents to support the use of CPMS available at EuroBloodNet’s How to use CPMS section!

2020-07-08

The ERN-EuroBloodNet’s Operational Helpdesk has produced four new documents “One-page...

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EuroBloodNet's EDU YouTube channel has been launched!

EuroBloodNet's EDU YouTube channel has been launched!

2020-07-01

We are immensely proud to inform you all that EuroBloodNet...

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EMA waives fees for scientific advice for academia developing orphan drugs for rare diseases!

EMA waives fees for scientific advice for academia developing orphan drugs for rare diseases!

2020-06-26

With this initiative EMA searches to encourage the development of...

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Find the Haemoglobinopathy Variant Curation Expert Panel recognised by ClinGen!

Find the Haemoglobinopathy Variant Curation Expert Panel recognised by ClinGen!

2020-06-22

The Haemoglobinopathy Curation Expert Panel (VCEP), is a joint international...

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HARMONY Alliance has launched a Delphi survey to develop a core outcome set for Non-Hodgkin Lymphoma

HARMONY Alliance has launched a Delphi survey to develop a core outcome set for Non-Hodgkin Lymphoma

2020-06-22

The aim of the initiative is to establish a core...

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Check the ERN-EuroBloodNet patients' testimony videos for World Sickle Cell Disease Awareness day!

Check the ERN-EuroBloodNet patients' testimony videos for World Sickle Cell Disease Awareness day!

2020-06-19

The 19th of June is the World Sickle Cell Disease...

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The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Barcelona!

The ERN-EuroBloodNet coordination team has been expanded with the new incorporation of an ERN manager in Barcelona!

2020-06-10

Maria Rodríguez has joined the ERN-EuroBloodNet coordination team, based at...

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The European Rare Blood Disorders Platform (ENROL) has officially started! Participate in the online Kick off Meeting next 2nd July!

The European Rare Blood Disorders Platform (ENROL) has officially started! Participate in the online Kick off Meeting next 2nd July!

2020-06-03

ENROL has been conceived in the core of ERN-EuroBloodNet as...

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ELIXIR publishes 10 rules for making training materials FAIR

ELIXIR publishes 10 rules for making training materials FAIR

2020-05-26

The implementation of the 10 rules allows the FAIRification of...

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ENROL and the Top 10 research priorities from the European EuroBloodNet/ASCAT Network of Sickle Cell Disease Patients will be presented at the EHA 25th Congress

ENROL and the Top 10 research priorities from the European EuroBloodNet/ASCAT Network of Sickle Cell Disease Patients will be presented at the EHA 25th Congress

2020-05-26

EuroBloodNet will present two posters during the 25th European Hematology...

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EURORDIS Rare Barometer survey infographic on Rare Disease perspectives on data sharing and data protection is now available in 23 languages!

EURORDIS Rare Barometer survey infographic on Rare Disease perspectives on data sharing and data protection is now available in 23 languages!

2020-05-22

A graphic report has been also produced showing the results...

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"ERN-EuroBloodNet Topic on Focus Cutaneous Lymphoma" starts with more than 200 registrations from all over the world!

"ERN-EuroBloodNet Topic on Focus Cutaneous Lymphoma" starts with more than 200 registrations from all over the world!

2020-05-18

The program has been approved with 7 credits by the...

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Keep updated on ERN-EuroBloodNet actions through its communication channels!

Keep updated on ERN-EuroBloodNet actions through its communication channels!

2020-04-28

Subscribe to the newsletter and follow us on Twitter, LinkedIn...

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Register to the new Webinars program! "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" is starting on May!

Register to the new Webinars program! "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" is starting on May!

2020-04-27

EuroBloodNet Topic on focus will encompass a set of comprehensive...

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Register until 1st May to the European Conference on Rare Diseases & Orphan Products (ECRD) 2020!

Register until 1st May to the European Conference on Rare Diseases & Orphan Products (ECRD) 2020!

2020-04-20

Be part of the global rare disease community at ECRD...

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ERN-EuroBloodNet Real time Collaborative Platform on Red Blood Cell and COVID19 patients is open!

ERN-EuroBloodNet Real time Collaborative Platform on Red Blood Cell and COVID19 patients is open!

2020-04-17

Join the ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and...

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European Hematology Association (EHA) annual congress goes Online on June 11-14

European Hematology Association (EHA) annual congress goes Online on June 11-14

2020-04-14

Due to COVID-19 pandemia, the the 25th Congress of the...

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EURORDIS publishes "No time to lose: Building a data strategy for the European Reference Networks"

EURORDIS publishes "No time to lose: Building a data strategy for the European Reference Networks"

2020-04-08

The objective of this paper is to trigger a strategic...

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Report of the "Workshop on the use of registries in the monitoring of cancer therapies based on tumours’ genetic and molecular features" hosted in November 2019 by the EMA

Report of the "Workshop on the use of registries in the monitoring of cancer therapies based on tumours’ genetic and molecular features" hosted in November 2019 by the EMA

2020-04-08

The European Medicines Agency (EMA) hosted a workshop in November...

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ERN-EuroBloodNet will be presenting two posters at European Conference on Rare Diseases & Orphan Products (ECRD) 2020!

ERN-EuroBloodNet will be presenting two posters at European Conference on Rare Diseases & Orphan Products (ECRD) 2020!

2020-04-06

“ENROL: The European Rare Blood Disorders Platform” and “ERN-EuroBloodNet: Establishment...

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Guidelines on EU Emergency Assistance in Cross-Border Cooperation in Healthcare related to the COVID-19 crisis

Guidelines on EU Emergency Assistance in Cross-Border Cooperation in Healthcare related to the COVID-19 crisis

2020-04-06

Guidelines will help national, regional and local authorities, through a...

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Have you checked out "EuroBloodNet Thursdays Webinars" Program? Register now!

Have you checked out "EuroBloodNet Thursdays Webinars" Program? Register now!

2020-04-06

Webinar program is mainly addressed on very rare diseases, complex...

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IthaScore, a gene-ranking metric for haemoglobinopathy-specific phenotypes

IthaScore, a gene-ranking metric for haemoglobinopathy-specific phenotypes

2020-04-03

The ITHANET portal is an expanding resource for clinicians and...

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COVID-19 and Red Hematological Diseases - Keep updated at the EuroBloodNet dedicated section

COVID-19 and Red Hematological Diseases - Keep updated at the EuroBloodNet dedicated section

2020-03-27

The correct treatment and management of infection by Coronavirus (COVID-19)...

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COVID-19 infection and Red Blood Cell Disorders

COVID-19 infection and Red Blood Cell Disorders

2020-03-20

The correct treatment and management of these patients may be...

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New Webinars program! "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" is starting on May!

New Webinars program! "EuroBloodNet's Topic on focus: Cutaneous Lymphoma" is starting on May!

2020-03-18

EuroBloodNet Topic on focus will encompass a set of comprehensive...

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European Conference on Rare Diseases & Orphan Products (ECRD) 2020 moves online next 14-16 May

European Conference on Rare Diseases & Orphan Products (ECRD) 2020 moves online next 14-16 May

2020-03-17

In the context of the current COVID-19 pandemic and in...

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Feasibility study on the opportunity of setting up a European Expert Network for Rare communicable diseases and other rare pathologies in the context of Mobility and Globalization (EURaDMoG)

Feasibility study on the opportunity of setting up a European Expert Network for Rare communicable diseases and other rare pathologies in the context of Mobility and Globalization (EURaDMoG)

2020-03-10

The study, funded by the EU, was produced under the...

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Rare Disease Day 2020 is almost here! Get involved!

Rare Disease Day 2020 is almost here! Get involved!

2020-02-25

Rare Disease Day improves knowledge amongst the general public of...

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ERN-EuroBloodNet new social networks! Follow us on Facebook and Linkedin!

ERN-EuroBloodNet new social networks! Follow us on Facebook and Linkedin!

2020-02-24

In order to increase the outreach of network actions and...

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2020 Belgian meeting on Red Blood Cell disorders for scientists and patients will be held next 5th March!

2020 Belgian meeting on Red Blood Cell disorders for scientists and patients will be held next 5th March!

2020-02-19

Registration is open!

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2020 Lymphoma Coalition Global Patient Survey on Lymphomas and Chronic Lymphocytic Leukaemia is now live!

2020 Lymphoma Coalition Global Patient Survey on Lymphomas and Chronic Lymphocytic Leukaemia is now live!

2020-02-12

ERN-EuroBloodNet is proud to collaborate with Europe Lymphoma Coalition on...

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ERN-EuroBloodNet Coordination team has been expanded with the incorporation of a clinical research manager and the new CPMS and e-Learning manager!

ERN-EuroBloodNet Coordination team has been expanded with the incorporation of a clinical research manager and the new CPMS and e-Learning manager!

2020-02-12

Rima Bayoud Benferhat is based in AP-HP Hôpital Saint Louis...

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Europe's Beating Cancer Plan was presented at the European Parliament on World Cancer Day

Europe's Beating Cancer Plan was presented at the European Parliament on World Cancer Day

2020-02-05

Europe's Cancer Plan will propose actions at every key stage...

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New search tool for ERNs on the Europa website!

New search tool for ERNs on the Europa website!

2020-02-04

Commission website (Europa) now hosts a searchable interface with details...

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"The majority of continuing education events I have ever attended were much more theoretically orientated. EuroBloodNet perceptorship was totally different." Read the testimonies of the first PNH and AA program!

"The majority of continuing education events I have ever attended were much more theoretically orientated. EuroBloodNet perceptorship was totally different." Read the testimonies of the first PNH and AA program!

2020-01-30

First preceptorship has been hosted by AP-HP, Hôpital Saint-Louis under...

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EVIDENCE project Kick off Meeting marks the launch of the Marie Curie - ITN project coordinated by Prof Lars Kaestner!

EVIDENCE project Kick off Meeting marks the launch of the Marie Curie - ITN project coordinated by Prof Lars Kaestner!

2020-01-30

EVIDENCE project (Erythrocytes properties and viability in dependence of flow...

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Check the 3rd Board of Network meeting Outcomes report and slides! 4th BoN meeting will be held 22-23 October in Paris - SAVE THE DATE!!

Check the 3rd Board of Network meeting Outcomes report and slides! 4th BoN meeting will be held 22-23 October in Paris - SAVE THE DATE!!

2020-01-29

3rd ERN-EuroBloodNet Board of Network meeting was held last 13...

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Find out the European Joint Programme (EJP) on Rare Diseases calls!

Find out the European Joint Programme (EJP) on Rare Diseases calls!

2020-01-28

EJP fosters annual Joint Translational Calls, fund Networking Support Scheme...

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The European Rare Blood Disorders Platform (ENROL) has been approved for funding by the European Commission!

The European Rare Blood Disorders Platform (ENROL) has been approved for funding by the European Commission!

2020-01-20

ENROL is conceived in the core of ERN-EuroBloodNet as an...

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Rare Disease Day 2020: One month to go! Get involved!

Rare Disease Day 2020: One month to go! Get involved!

2020-01-17

Rare Disease Day represents the greatest occassion of raising global awareness...

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Inaugural meeting of the Global Alliance of Sickle Cell Disease Organizations (GASCDO)

Inaugural meeting of the Global Alliance of Sickle Cell Disease Organizations (GASCDO)

2020-01-14

The inaugural meeting of the GASCDO took place last 10th of...

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"Digital solutions for health and care could truly revolutionise health and care services and have the potential of helping millions of people enjoy better health"

"Digital solutions for health and care could truly revolutionise health and care services and have the potential of helping millions of people enjoy better health"

2020-01-10

Andrzej Rys, European Commission Directorate-General for Health and Food Safety,...

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EJP RD International course: Training on strategies to foster solutions of undiagnosed rare disease cases will be held 27-29 April - Register now!

EJP RD International course: Training on strategies to foster solutions of undiagnosed rare disease cases will be held 27-29 April - Register now!

2020-01-10

The course will provide participants with useful tools, instruments and...

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EuroBloodNet Thursdays Webinars Program starts in January 2020! Register now!

EuroBloodNet Thursdays Webinars Program starts in January 2020! Register now!

2019-12-20

Webinar program is mainly addressed on very rare diseases, complex...

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RE(ACT) Congress and IRDiRC Conference 2020 will be held Berlin, Germany 11-14 March

RE(ACT) Congress and IRDiRC Conference 2020 will be held Berlin, Germany 11-14 March

2019-12-16

Early bird registration is available until December 20th!

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Congratulations to the winners of EURORDIS Black Pearl Awards 2020!

Congratulations to the winners of EURORDIS Black Pearl Awards 2020!

2019-12-12

The recipients of the EURORDIS Black Pearl Awards 2020 will...

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The Call for new members joining European Reference Networks has closed with 40 applications for EuroBloodNet

The Call for new members joining European Reference Networks has closed with 40 applications for EuroBloodNet

2019-12-11

The ERN call for membership gives the possibility to the...

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State of Health in the EU 2019: the European Commission published the reports that depict the profile of health systems in 30 countries

2019-12-10

Country Health Profiles are being issued with the Companion Report...

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The second ERNs Newsletter is already available with two inspirational stories from EuroBloodNet!

The second ERNs Newsletter is already available with two inspirational stories from EuroBloodNet!

2019-12-09

EuroBloodNet has contributed in this edition with the story of...

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European Conference on Rare Diseases & Orphan Products (ECRD) will take place 15-16 May in Stockholm, shape the future for people living with a rare disease!

European Conference on Rare Diseases & Orphan Products (ECRD) will take place 15-16 May in Stockholm, shape the future for people living with a rare disease!

2019-11-25

Be part of the global rare disease community at ECRD...

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First gene therapy trial to treat severe pyruvate kinase deficiency (PKD) is now open for enrollment!

First gene therapy trial to treat severe pyruvate kinase deficiency (PKD) is now open for enrollment!

2019-11-25

An open-label, phase 1 gene therapy study consisting of autologous...

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LAST 2 POSITIONS AVAILABLE for EuroBloodNet Preceptorships for health professionals on Aplastic Anaemia and Paroxysmal Nocturnal Hemoglobinuria!

LAST 2 POSITIONS AVAILABLE for EuroBloodNet Preceptorships for health professionals on Aplastic Anaemia and Paroxysmal Nocturnal Hemoglobinuria!

2019-11-25

EuroBloodNet is endorsing three Preceptorships programs to provide applicants with...

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“Gain-of-function mutations in PIEZO1 directly impair hepatic iron metabolism via the inhibition of the BMP/SMADs pathway” shows a link between PIEZO1 and iron metabolism

“Gain-of-function mutations in PIEZO1 directly impair hepatic iron metabolism via the inhibition of the BMP/SMADs pathway” shows a link between PIEZO1 and iron metabolism

2019-11-22

The paper has been published in the American Journal of...

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The Conference on Global Globin 2020 Challenge Conference 2019 was held 28th-30th October at the UNESCO with the participation of several EuroBloodNet experts

The Conference on Global Globin 2020 Challenge Conference 2019 was held 28th-30th October at the UNESCO with the participation of several EuroBloodNet experts

2019-11-22

All abstracts of presentations will be published in the upcoming...

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3rd ERN-EuroBloodNet Board of Network meeting took place 13th and 14th November with more than 80 participants, thanks to all!

3rd ERN-EuroBloodNet Board of Network meeting took place 13th and 14th November with more than 80 participants, thanks to all!

2019-11-20

The ERN-EuroBloodNet annual meeting took place in Vall d'Hebron University...

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RELEVANCE (Regulation of red cell life-span, erythropoiesis, survival, senescence and clearance) Marie-Curie ITN project is coming to an end after training 15 early stage researchers

RELEVANCE (Regulation of red cell life-span, erythropoiesis, survival, senescence and clearance) Marie-Curie ITN project is coming to an end after training 15 early stage researchers

2019-11-19

RELEVANCE results provides the basis for the new Marie Curie...

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Sickle Cell Disease Research Prioritisation Workshop at ASCAT 2019, a joint project of ERN-EuroBloodNet and ASCAT with a "Top 10" priorities on research from patients' perspective

Sickle Cell Disease Research Prioritisation Workshop at ASCAT 2019, a joint project of ERN-EuroBloodNet and ASCAT with a "Top 10" priorities on research from patients' perspective

2019-11-05

The meeting has provided the perfect opportunity for patients to...

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EuroBloodNet is recruiting a full time position for CPMS helpdesk in Brussels!

EuroBloodNet is recruiting a full time position for CPMS helpdesk in Brussels!

2019-10-25

Application is open until November 15th

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"New perspectives in the approach of children with hematological diseases and inborn errors" will be addressed next 5th November at Vall d'Hebron University Hospital

"New perspectives in the approach of children with hematological diseases and inborn errors" will be addressed next 5th November at Vall d'Hebron University Hospital

2019-10-18

The meeting is organized by Vall d'Hebron University Hospital with...

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The ERN-EuroBloodNet 3rd Board of the Network meeting will take place next 13 and 14 November in Barcelona! Register now!

The ERN-EuroBloodNet 3rd Board of the Network meeting will take place next 13 and 14 November in Barcelona! Register now!

2019-10-17

The meeting will take place at Vall d'Hebron University Hospital...

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The EVIDENCE project, now recruiting researchers for the exploration of the properties and behaviour of erythrocytes in extra-cellular environment!

The EVIDENCE project, now recruiting researchers for the exploration of the properties and behaviour of erythrocytes in extra-cellular environment!

2019-10-02

Erythrocytes properties and viability in dependence of flow and extra-cellular...

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The project "Connecting EuroBloodNet" has recently finished with the establishment of the CPMS Operational Helpdesk and identification of CPMS customization

The project "Connecting EuroBloodNet" has recently finished with the establishment of the CPMS Operational Helpdesk and identification of CPMS customization

2019-10-02

Actions initiated will be continued through "Connecting EuroBloodNet II" aiming...

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The Call for new members joining European Reference Networks is open until 30th November!

The Call for new members joining European Reference Networks is open until 30th November!

2019-09-30

The call is an opportunity to enlarge the geographical coverage...

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EU protects campaign: Silver award for ERNs video at Cannes Corporate Media & TV Awards!

EU protects campaign: Silver award for ERNs video at Cannes Corporate Media & TV Awards!

2019-09-27

The short film shows a Europe-wide collaboration that helped a...

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The Joint Action on Rare Cancers presents the Rare Cancer Agenda 2030 at the European Parliament

The Joint Action on Rare Cancers presents the Rare Cancer Agenda 2030 at the European Parliament

2019-09-12

An event hosted at the European Parliament has celebrated the...

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"Safety and Efficacy of Mitapivat in Pyruvate Kinase Deficiency" has just been published

"Safety and Efficacy of Mitapivat in Pyruvate Kinase Deficiency" has just been published

2019-09-09

The study associates the administration of mitapivat with a rapid...

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Global Globin 2020 Challenge Conference 2019 - Submit your abstract until 15th September!

Global Globin 2020 Challenge Conference 2019 - Submit your abstract until 15th September!

2019-09-06

The Conference will take place next 28th-30th October at the...

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New Human Phenotype Ontology (HPO) release for September 2019 out now!

New Human Phenotype Ontology (HPO) release for September 2019 out now!

2019-09-06

HPO provides a standardized vocabulary of phenotypic abnormalities encountered in...

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European Commission public consultation: Horizon Europe Co-design and implementation

European Commission public consultation: Horizon Europe Co-design and implementation

2019-09-05

The European Commission has launched an online public consultation on Horizon...

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New ePAG for rare bleeding disorders!

New ePAG for rare bleeding disorders!

2019-09-04

We are very happy to announce that Baiba Ziemele has...

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The conference “Rare disease perspectives in Central – Eastern Europe” organized by the European Joint Programme on Rare Diseases will be held next 16th September in Poland

The conference “Rare disease perspectives in Central – Eastern Europe” organized by the European Joint Programme on Rare Diseases will be held next 16th September in Poland

2019-08-29

Registration is opened until September 9th!

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The new call for European Reference Networks membership will be opened soon

The new call for European Reference Networks membership will be opened soon

2019-08-28

The “ERN Assessment manual for applicants: description and procedures”, the...

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EHA-SWG Scientific Meeting on Red Cell and Iron Metabolism Defects: "From basic science to clinical case application" will take place next 7-9 November in Madrid

EHA-SWG Scientific Meeting on Red Cell and Iron Metabolism Defects: "From basic science to clinical case application" will take place next 7-9 November in Madrid

2019-08-27

The second edition of EHA-SWG Scientific Meeting will examine the red...

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Two statements adopted on ERNs integration into the national health systems and cooperation with industry

Two statements adopted on ERNs integration into the national health systems and cooperation with industry

2019-07-11

The ERN Board of Member States adopted both statements during...

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Nominations for the EURORDIS Black Pearl Awards 2020 are now open!

Nominations for the EURORDIS Black Pearl Awards 2020 are now open!

2019-07-09

Awards are presented to patient advocates, organisations, policy makers, scientists,...

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First issue of the ERN Newsletter has been launched!

First issue of the ERN Newsletter has been launched!

2019-07-08

The European Commission has produced the ERN newsletter aiming to...

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New ePAG for Hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis subnetwork!

New ePAG for Hemochromatosis and other rare genetic disorders of iron metabolism and heme synthesis subnetwork!

2019-07-08

We are very happy to announce that Dag Erling Stakvik...

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Sickle Cell Disease World Day 2019!

Sickle Cell Disease World Day 2019!

2019-06-26

"It is very important to have the voice from politics,...

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2nd ERN-EuroBloodNet interactive session at EHA Congress

2nd ERN-EuroBloodNet interactive session at EHA Congress

2019-06-18

The 2nd interactive session at EHA Congress took place last...

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ERN-EuroBloodNet deliverables from 2nd year of implementation already available!

ERN-EuroBloodNet deliverables from 2nd year of implementation already available!

2019-05-12

All the activites and results achieved during second year of...

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5th ERN-EuroBloodNet Scientific and Strategic Board Meeting

5th ERN-EuroBloodNet Scientific and Strategic Board Meeting

2019-04-10

5th ERN-EuroBloodNet Scientific and Strategic Board Meeting was held last...

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Make your voice heard: new Rare Barometer Voices survey on rare disease patients’ experience of treatments is now open!

Make your voice heard: new Rare Barometer Voices survey on rare disease patients’ experience of treatments is now open!

2019-03-31

The initiative will get an insight into which treatments and...

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Flyer and poster for patients and Health professionals now available in all languages!

Flyer and poster for patients and Health professionals now available in all languages!

2019-03-19

New ERNs dissemination material addressed to patients and health professionals...

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The European Platform on Rare Disease Registration has been launched!

The European Platform on Rare Disease Registration has been launched!

2019-03-11

Information about rare disease patients is spread in hundreds of...

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Rare Disease Models and Mechanisms-Europe registry open for registration

Rare Disease Models and Mechanisms-Europe registry open for registration

2019-02-19

"Solve-RD – Solving the unsolved Rare Diseases" is a large...

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EURORDIS Black Pearl Awards 2019

EURORDIS Black Pearl Awards 2019

2019-02-15

The 8th edition of the EURORDIS Black Pearl Awards took...

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#ProtectERNs - The impact of Brexit from the Patients affected by Rare Hematological perspective

#ProtectERNs - The impact of Brexit from the Patients affected by Rare Hematological perspective

2019-02-07

ERN-EuroBloodNet ePAGs Maria Piggin and Sophie Wintrich, both based in...

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Rare Disease Day 2019 "Bridging health and social care": Get involved!

Rare Disease Day 2019 "Bridging health and social care": Get involved!

2019-01-30

Nex 28th February, the 12th edition of Rare Disease Day...

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Cross-border healthcare: are EU citizens aware?

Cross-border healthcare: are EU citizens aware?

2019-01-25

"As legislation that clearly impacts EU citizens, it should be...

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"Addressing the diagnostic gaps in pyruvate kinase deficiency: Consensus recommendations on the diagnosis of pyruvate kinase deficiency" Published under the endorsement of ERN-EuroBloodNet

"Addressing the diagnostic gaps in pyruvate kinase deficiency: Consensus recommendations on the diagnosis of pyruvate kinase deficiency" Published under the endorsement of ERN-EuroBloodNet

2018-12-03

Recommendations has been published at the Amerian Journal of Hematology...

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Summary report and Video recording of the 4th Conference on European Reference Networks available!

Summary report and Video recording of the 4th Conference on European Reference Networks available!

2018-11-27

The fourth Conference on European Reference Networks (ERNs) took place...

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"ESH International Conference on Erythropoiesis Control and Ineffective Erythropoiesis: from Bench to Bedside" will take place on 2019, March, 15-17, in Budapest

"ESH International Conference on Erythropoiesis Control and Ineffective Erythropoiesis: from Bench to Bedside" will take place on 2019, March, 15-17, in Budapest

2018-11-19

Organized by the European School of Hematology (ESH), the main...

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ERN-EuroBloodNet 2nd Board of the Network meeting was successfully held with the participation of more than 70 attendants!

ERN-EuroBloodNet 2nd Board of the Network meeting was successfully held with the participation of more than 70 attendants!

2018-11-12

The meeting represented a big step forward on the network...

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Dr. Franz Schaefer, Chair of the Coordinators of the 24 ERNs, has answered key questions on present and future of ERNs

Dr. Franz Schaefer, Chair of the Coordinators of the 24 ERNs, has answered key questions on present and future of ERNs

2018-10-26

One of the biggest challenges, says Schaefer, is getting local,...

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"Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference" has just been published with the endorsement of ERN-EuroBloodNet

"Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference" has just been published with the endorsement of ERN-EuroBloodNet

2018-10-18

Recommendations has been published at the British Journal of Hematology...

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The special supplement on the 9th European Conference on Rare Diseases & Orphan Products (ECRD) is now available!

The special supplement on the 9th European Conference on Rare Diseases & Orphan Products (ECRD) is now available!

2018-10-18

Special supplement for the ECRD Vienna 2018 has been published...

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ERN-EuroBloodNet member Vall d'Hebron will become the headquarters of the International Conference of Rare Diseases and Orphan Drugs (ICORD)

ERN-EuroBloodNet member Vall d'Hebron will become the headquarters of the International Conference of Rare Diseases and Orphan Drugs (ICORD)

2018-10-17

Vall d'Hebron Barcelona Hospital Campus will become the new headquarters...

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The 2nd ERN-EuroBloodNet Board of the Network meeting will take place the 8th November in Paris!

The 2nd ERN-EuroBloodNet Board of the Network meeting will take place the 8th November in Paris!

2018-10-17

If you are an ERN-EuroBloodNet member and are willing to...

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ERN-EuroBloodNet Disease Search Tool release!

ERN-EuroBloodNet Disease Search Tool release!

2018-10-10

The engine searches experts based on the information gathered through...

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Five ERN-EuroBloodNet centers have successfully passed the second wave of assessment carried out by ACSA

Five ERN-EuroBloodNet centers have successfully passed the second wave of assessment carried out by ACSA

2018-10-04

Five ERN-EuroBloodNet Centers were selected to undergo the technical assessment...

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4th ERN-EuroBloodNet Scientific and Strategic Board Meeting

4th ERN-EuroBloodNet Scientific and Strategic Board Meeting

2018-10-02

The 4th ERN-EuroBloodNet Scientific and Strategic Board Meeting was held...

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4th Conference on European Reference Networks, "ERNs in action" will take place on 21&22 November 2018 in Brussels

4th Conference on European Reference Networks, "ERNs in action" will take place on 21&22 November 2018 in Brussels

2018-09-06

With the involvement of the main ERNs stakeholders, including ERNs...

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RD-Connect invites ERN members to join the RD-Connect Community

RD-Connect invites ERN members to join the RD-Connect Community

2018-08-31

In July 2018 the new RD-Connect Community was launched as...

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Joint Action on Rare Cancers (JARC) and ERNs

Joint Action on Rare Cancers (JARC) and ERNs

2018-08-21

JARC works closely with the European Reference Networks (ERNs) to...

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RD-Connect announces educational webinar series for ERN Stakeholders

RD-Connect announces educational webinar series for ERN Stakeholders

2018-08-20

RD-Connect is organising a series of webinars aiming to train...

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ERN video clip now available in all EU languages

ERN video clip now available in all EU languages

2018-08-19

The European Reference Networks video is now available in all...

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ERN-EuroBloodNet interactive session at EHA Annual Congress

ERN-EuroBloodNet interactive session at EHA Annual Congress

2018-06-26

Taking advantage of the biggest congress on hematology in Europe,...

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Health policies in EU budget 2021-2027

Health policies in EU budget 2021-2027

2018-06-04

The European Commission adopted last May a legislative proposal for...

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Release of "Plaza" at the ERNs Collaborative Platform

Release of "Plaza" at the ERNs Collaborative Platform

2018-06-04

'Plaza' is the Spanish word for city square and this...

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European Reference Networks one year anniversary

European Reference Networks one year anniversary

2018-03-12

ERNs after first year of activity

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Rare Disease Day 2018 is approaching! Show your rare. Show you care.

Rare Disease Day 2018 is approaching! Show your rare. Show you care.

2018-02-02

28 February 2018 will be the eleventh international Rare Disease...

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Rare Anaemias Disorders European Epidemiological Platform (RADeep)

Rare Anaemias Disorders European Epidemiological Platform (RADeep)

2018-01-15

The umbrella for both new and already existing European patients’...

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Winners of the EURORDIS Black Pearl Awards 2018!

Winners of the EURORDIS Black Pearl Awards 2018!

2018-01-15

Stars of the rare disease community recognised for their efforts...

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ERN-EuroBloodNet 1st Board of the Network meeting!

ERN-EuroBloodNet 1st Board of the Network meeting!

2017-11-20

The 1st BoN meeting was successfully held last November 10th...

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ERN-EuroBloodNet Dissemination material is already available!

ERN-EuroBloodNet Dissemination material is already available!

2017-11-13

Check the new leaflet and flyer!

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ERN-EuroBloodNet 2nd Scientific and Strategic Board Meeting

ERN-EuroBloodNet 2nd Scientific and Strategic Board Meeting

2017-09-12

The meeting was held in Brussels last 6th September

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New video on European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors

New video on European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors

2017-06-29

Watch the new video on ERNs and discover the heart...

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EuroBloodNet was present at the 2nd ERN Coordinators Group Meeting and at the EHA Annual Congress

EuroBloodNet was present at the 2nd ERN Coordinators Group Meeting and at the EHA Annual Congress

2017-06-27

A brief Scientific and Strategic Board meeting took place at...

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The guideline document "Standard procedure and guide for the coding with Orphacodes" has been produced by RD-Action

The guideline document "Standard procedure and guide for the coding with Orphacodes" has been produced by RD-Action

2017-06-16

Guideline contains 6 recommendations adapted to different and well defined...

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Watch the European Reference Networks video, flyer and brochure!

Watch the European Reference Networks video, flyer and brochure!

2017-03-15

Share. Care. Cure.

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EuroBloodNet, the European Reference Network on Rare Hematological Diseases, awarded by the EC as one of the approved ERNs

EuroBloodNet, the European Reference Network on Rare Hematological Diseases, awarded by the EC as one of the approved ERNs

2017-03-11

The first 24 ERNs were awarded by the EC at...

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Euro Blood Net