News | EuroBloodNet

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 open and free to all patients, families and anyone curious about the future of genetic medicine!

Save the date for the EHA2026 Congress!

2025-07-08

Let's meet at EHA 2026, which is taking place from 11th to 14th June in Stockholm, Sweden.

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 and requirements for potential gene therapy treatments for Pyruvate Kinase Deficiency (PKD) and Congenital Dyserythropoietic Anemia (CDA).

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 will be held in Italian

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 diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe.

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 the general public on the Apple App Store and Google Play Store.

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 in Sickle Cell Disease was launched alongside the EHA conference in Milan on 12 June!

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 to Adult Care in Sickle Cell Disease will take place alongside the EHA conference in Milan on 12 June.

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 Europe and will be held from 12th to 15th of June 2025.

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

2025-05-28

WHO elevates Rare Diseases to global health priority status with unanimous resolution

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 care for rare diseases across Europe.

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

2025-05-15

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

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 AI applications in healthcare and addressing potential challenges.

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

Have you already submitted your abstract for ASCAT 2025?

2025-04-22

The call for abstracts is open until 9 June!

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 Rare Diseases

VI Edition: Focus in Paediatric Oncology and Haematology 2025

2025-04-15

Don't miss the 6th edition of this webinar which will take place online on 29 May 2025 and is free!

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 as new European Patient Advocacy Group (ePAG) representatives for the Myeloid Malignancies and Bleeding and Coagulation Disorders subnetworks respectively.

ERN-EuroBloodNet at EHA2025 Congress, save the date!

2025-03-28

ERN-EuroBloodNet will be present on this EHA2025 through a dedicated meeting that will take place on Friday 13th June - 13:00-16:00. Agenda and registration link will be followed soon!

World Orphan Drug Congress Europe 2025

2025-03-28

The World Orphan Drug Congress Europe is the largest and most established event globally for orphan drugs and rare diseases

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 Central Platform, a major step forward in building the European Health Data Space (EHDS) and enabling the secondary use of health data for research, innovation, policymaking, and public health.

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

2025-03-10

The purpose of the public consultation is to provide a basis for the forthcoming work of the Committee in bringing a better understanding and detailed knowledge of the challenges of persons affected by RD

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 with easy access to comprehensive, real-time information about clinical trials conducted in their area, increasing access to clinical research in the European Union

Regulation on the European Health Data Space published!

2025-03-05

The Regulation is an important milestone in the EU’s efforts to build a secure and efficient digital health ecosystem as part of the European data strategy.

Rare Disease Day 2025 is here!

2025-02-26

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers

JARDIN Care Pathways Toolkit for Healthcare Professionals & Patient Representatives

2025-02-25

JARDIN Care Pathways Toolkit has been released to support healthcare professionals, managers and patient representatives in the co-design and development of the ERN care pathways being supported in the JARDIN Joint Action

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 and expertise of the ERNs that make a tangible difference to the lives of patients with rare diseases and their families

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 of Burkitt lymphoma in the first-line setting to develop updated evidence-based and expert opinion-based recommendations on the management of this disease.

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

Three new ERN-EuroBloodNet Dissemination Pills already available!

2025-02-04

The new webinar program has been created to increase awareness of concrete ERN actions and results in short 10-20 min format, check them!

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 adaptation of existing products to better serve paediatric and orphan populations.

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 Von Willebrand Disease (VWD) Awareness Day to raise awareness of the disease among the bleeding disorders community and the wider audience.

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: Knowledge and Perspectives" is to understand the current interest and perspectives of the healthcare community about the concept of AI and its applications in haematology.

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 the development of treatments for rare and ultra-rare conditions and ultimately improve the lives of millions of patients across Europe and beyond.

Clinical Patient Management System 2.0 is already available!

2024-12-20

CPMS 2.0 includes new functionalities that facilitates the use of the platform to share cross-border complex cases

Check the ERN-EuroBloodNet 6th Progress meeting outcomes!

2024-12-19

ERN-EuroBloodNet 6th Progress meeting was held 21st November 2024 online, including a Plenary session on ERNs and Joint partnerships and different sessions on ERN-EuroBloodNet flieds of action

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 has been held December 7-10, 2024, in San Diego, California with a great number of ERN-EuroBloodNet experts attending and presenting actions linked to the ERN.

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 rare diseases using small molecules and biologicals - development and validation."

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 the first 5 years of evaluation

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 autumn!

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 in an interdisciplinary manner

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 November 2024 in Rome, has been endorsed by 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 of patient voices, especially youth advocates, in shaping the future of sickle cell transition care

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) with 19 participants and with relevant outcomes for the strategy of ENROL data gathering and analysis

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

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

2024-09-23

Discover the experience of the coordinator and the participants!

Do you know the ERN-EuroBloodNet Dissemination Pills?

2024-09-20

The ERN-EuroBloodNet Dissemination webinar program has been created to increase awareness of concrete ERN actions and results.

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), the predecessor of ERDERA

The EU survey on SCD is still active!

2024-09-12

ERN-EuroBloodNet is gathering the voices of people living with Sickle Cell Disease globally via a survey.

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 Europe and beyond!

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 be held in London.

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 your profile

EJP RD survey on "Data Resources and Tools Knowledge Awareness

2024-08-09

The survey aims to assess the knowledge of Rare Diseases research resources and tools, and evaluate the impact of the EJP RD on the research community.

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 year to raise awareness of this rare disease.

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, patient advocates, governmental authorities and healthcare professionals from the portuguese speaking countries.

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 the availability of this highly specialized procedure has been recently published in Pediatric Blood & Cancer journal.

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

2024-07-12

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

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 is now open!

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 diseases research ecosystem" delves into the collective achievements and ongoing efforts to foster a robust research environment for rare diseases.

Join the paediatric Patient Expert Group (PEG)!

2024-06-28

This is an initiative of the EJP RD and as a member of this group, you will be involved in training courses, practical activities, and ad hoc tool preparation.

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 for researchers and practitioners from the Health care Community.

ERICA Project General Assembly & ERN Research Conference

2024-06-20

The ERICA 4th General Assembly & ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy.

First International AL Amyloidosis meeting, for patients and doctors

2024-06-20

This Hybrid event will take place the 5th and 6th of July in Brussels!

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 points of view of people living with Sickle Cell Disease (patients, parents of patients, caregivers, partners, siblings) on how to improve outcomes in Sickle Cell Disease.

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 EHA Congress, 12-15 June 2025!

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 June 26 & the training for resouces June 28!

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, ALUA, St. Jude Children’s Research Hospital and ERN-EuroBloodNet.

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 last results on Rare Haematological diseases, from June 13-16 2024.

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

2024-06-04

Discover more about the groundbreaking approach of these publications!

The Education Newsletter has recently been launched!

2024-06-03

Find out everything you need to know about our education activities in the Education Newsletter.

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 700 people from 49 countries around the world.

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 Hemophilia (WFH) are jointly organising a Side Event on Access to Novel therapies

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 learning experience with expert educators.

The International Thalassaemia Day is coming up!

2024-05-03

On 8 May 2024, the global thalassaemia community will unite to celebrate International Thalassaemia Day.

ERN-EuroBloodNet will be present at the ECRD 2024!

2024-05-02

The 12th Edition will be held from 15th to 16th May 2024 and fully hybrid.

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 Vall d’Hebron Institut de Recerca (VHIR)

ERN-EuroBloodNet Meeting at EHA Annual Congress in Madrid 2024

2024-04-26

The dedicated ERN-EuroBloodNet meeting will take place at EHA Annual Congress on Thursday 13th of June 2024, from 13:00 to 16:00.

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) and be part of the discussion.

Focus in Paediatric Oncology and Haematology 2024 Webinar

2024-04-19

Don't miss the fifth edition of this program which will take place online on 30 May 2024 and is free!

EHA & ERN-EuroBloodNet Spotlight on Hypereosinophilic Syndrome

2024-04-02

Learn more about Hypereosinophilic Syndrome (HES) through an accredited European online educational program, designed by EHA and ERN-EuroBloodNet.

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 taking part to preceptorships

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

2024-03-03

Do not miss the oportunity to join the fully hybrid conference taking place online and at the Square in Brussels next May!

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 and handbooks you can use to build awareness.

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 videos available on eight languages thoughtfully crafted for patients seeking a deeper understanding of patient-centric research.

The ERN-EuroBloodNet community supports the Rare Disease Day!

2024-02-29

Several actions to raise awareness have been organized around Europe.

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 of people living with rare hematological diseases!

Participate in the EHA AYA Hematology Care Survey!

2024-02-21

Whether you are a practicing clinical hematologist specializing in pediatric or adult patients, a researcher, or part of the wider hematology community, your perspective is important.

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 to raise awareness on vWD

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 the European von Willebrand Disease Awareness Day, the 1st of February!

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 and handbooks you can use to build awareness.

EJP RD Final Conference will take place next May

2024-01-31

Block your agenda to attend the event!

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

2024-01-31

Submit your proposal before 23rd of February 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 and metabolism in hematological disorders"ª

Unveiling Tomorrow's Healthcare: GenoMed4All Consortium Meeting Recap

2024-01-30

This assembly emerged as a beacon of collaboration and resilience, underscoring the unwavering commitment of consortium members to drive transformative change.

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

2024-01-28

The consortium, a collaboration of various European entities, aims to leverage AI in combating rare hematological diseases, explored synergies between projects, laying the groundwork for collective impact and innovation in the healthcare domain.

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 on lessons learned and emerging trends in drug repurposing.

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.

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!

Hybrid ECRD poster abstract submission 2024 is still open!

2023-12-29

Submit your proposal before 23rd of February 2024.

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 managers, and patient organization representatives.

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).

Happy Holidays and Happy New Year 2024!

2023-12-20

May the peace and joy of the holidays be with you today and throughout the new year.

Participate in the 2024 Photo Contest Black Pearl Awards!

2023-12-18

Submit your proposal before 31st of January 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!

DrepaComunidade presenting at the International Conference on Art and Health

2023-12-04

The work presented explores the potential of utilizing art and creativity as therapeutic interventions to empower SCD patients and effectively manage their pain.

ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2023

2023-12-01

The SCD patient trainings organised by the ERN-EuroBloodNet at the ASCAT arrived at the fifth edition!

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 organized in the frame of the ERN-EuroBloodNet Thursday webinar program.

The next ECRD will be held next May 2024!

2023-11-30

Get ready for the next ECRD, a fully hybrid conference taking plane online and at the Square in Brussels.

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

2023-11-26

Thank you so much to the 127 attendants for their participation!

EHA2024 will be held next June 2024 in Madrid!

2023-11-19

Block your agenda with the published dates.

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 annual ASCAT conferences have provided an opportunity to enhance patient experience and empowerment in SCD in Europe, producing benefits for patients, caregivers, patient associations and health professionals.

HELIOS project has started!

2023-11-01

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

Last European Commision news about the ERNs

2023-10-30

Thank to the ERNs project the European Commission is making a difference to the lives of up to 36 million people across Europe who are living with a rare disease.

Thursday webinars are making a comeback!

2023-10-29

Stay tuned to our social media channels.

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 of November, has been supported by ERN-EuroBloodNet.

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 you treat children with thrombosis, contribute to the mapping.

The DrepaCommunity was in celebration!

2023-10-10

Attendants had the opportunity to be aware of ERN-EuroBloodNet's actions thanks to the expert Celeste Bento.

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.

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 of the ERNs given the relevant role in the improvement of the live of rare disease patients in Europe.

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 Unmet Medical Need by the EC.

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 you treat children with thrombosis, contribute to the mapping.

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 be held next 11th of October.

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 people living with Sickle Cell Disease (Patients, Parents' patients, Caregivers, Partners, Siblings) on how to improve the outcomes in Sickle Cell Disease

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 Hôpital Saint-Louis. Welcome on board!

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 autumn.

New ERN-EuroBloodNet ePAG!

2023-08-04

Ioana Todorova-Yanakieva is the new ePAG for Thrombotic thrombocytopenic purpura (TTP)

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 autumn.

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 29th of November 2023, has been supported by ERN- EuroBloodNet.

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

2023-08-01

A new accredited online educational program will start in September 2023.

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

2023-08-01

Discover the content and share it among your community!

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 form of 11 questions that will help us to understand your needs and to provide you with the appropriate assistance.

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.

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

2023-07-30

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

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!

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 of the WP3 Patient-Centred Research in Rare Diseases.

IMPACT-AML Kick-starts its Mission!

2023-07-16

The primary objectives were unveiled during the meeting, each aimed at revolutionizing the approach to R/R AML treatment and ensuring inclusivity and accessibility.

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 for the diagnosis and treatment of rare haematological diseases.

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

2023-07-13

Discover the ERN-EuroBloodNet experience at the congress!

CPMS Updates and New Guides

2023-07-12

Have a look at our CPMS guides to be part of this project!

“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 overall approach and management of Sickle cell disease patients in EU through key actions developed by the network.

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 or online.

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 course.

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

2023-06-20

Submit your answers before 26th of June 2023.

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 lives of individuals and families affected by this condition.

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 World Sickle Cell Day – 24-Hour Sickle Cell-a-Thon!

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 policy report delivered to policymakers and regulatory bodies.

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 you treat children with thrombosis, contribute to the mapping

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!

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 May 2023.

Now available: ENROL recommendations for interoperability!

2023-05-31

The EU RD-CDS codification schemes have been used for the ENROL Rare Haematological Diseases Common Data Set (RHD-CDS).

The ERN-EuroBloodNet will be present at the EHA2023!

2023-05-31

Do not miss the opportunity to stay updated on the last results on Rare Haematological diseases.

The ERN Preceptorship experience in the Archbishop Makarios III Hospital

2023-05-28

Discover the experience of the coordinator and the participants!

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 policy report delivered to policymakers and regulatory bodies.

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 you treat children with thrombosis, contribute to the mapping

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

2023-05-14

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

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 collaboration with EJP-RD task partners

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

2023-04-30

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

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 of Transcranial Doppler sonography.

Videos of ENROL Webinars for patients are now available!

2023-04-24

You can watch the recordings of the educational sessions on ERN-EuroBloodNet EDU YouTube Channel or on our website.

ERN-EuroBloodNet at the EHA2023 Hybrid Congress!

2023-04-19

Stay tunned to our publications for further information.

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

2023-04-19

Discover the experience of the coordinator and the participants!

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 will be actively present on the platform to answer questions!

ENROL closing meeting - 1st phase of the project!

2023-04-01

The meeting will be held online on Wednesday 3rd of May 2023 from 14:00-17:00 (CET)

Participate in “Next Generation Diagnosis in Leukemia"

2023-03-30

The free virtual course is open to medical doctors and diagnosis professionals of haematological neoplasms.

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

2023-03-29

Discover the experience of the coordinator and the participants!

GenoMed4All Consortium and ERN-EuroBloodNet working together!

2023-03-22

A comment of the team has been published on Hemasphere.

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 offered.

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

2023-03-15

A new accredited online educational program will be launched in September 2023.

EHA2023 Hybrid Congress Program is available!

2023-03-14

Visit the website to discover the topics the congress offers to the hematology community this year.

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

2023-03-03

Interested candidates are invited to send their resume, biosketch and letter of motivation before the 2nd of April, 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 and handbooks you can use to build awareness.

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

2023-02-28

The deadline for abstract submission is March 1, 2023 at 23:589 (CET).

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, neurology, haematology, neuroradiology residents and fellows in all related fields

The ERN-EuroBloodNet community supports the Rare Disease Day!

2023-02-28

Several actions to raise awareness have been organized around Europe.

The project "Connecting EuroBloodNet III" has recently finished!

2023-02-28

Actions initiated will be continued through the ERN-EuroBloodNet grants aiming to implement the CPMS customization and consolidate the ERN-EuroBloodNet eLearning platform

ERN-EuroBloodNet supporting the Rare Disease Day 2023

2023-02-27

By adhering to the Rare Diseass Day 2023, the ERN-EuroBlodNet aims to raising awareness on Rare Haematological Disorders for all people living with those conditions.

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 CET.

New: Symposium focused on Sickle cell Disease and Thalassemia!

2023-02-16

Do not miss the event organized by the Hospital General Universitario Gregorio Marañón.

Attend the International Neurovascular Training Course on Sickle Cell Disease!

2023-02-12

The course is addressed to medical doctors specialized in pediatrics, neurology, haematology, neuroradiology residents and fellows in all related fields

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

2023-02-12

Discover the experience of the coordinator and the participants!

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

2023-02-08

Perform you registration before the next 22nd of February.

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

2023-02-08

Perform you registration before the next 22nd of February.

Are you ready for EHA2023 Hybrid Congress?

2023-01-31

The preliminary program is already available on the EHA website!

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

2023-01-31

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

New IRDiRC call for Members!

2023-01-30

Discover the newly approves task forces.

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

2023-01-30

Do you need expert’s advice on rare diseases cases? Do you need to get familiar with the CPMS and get updated on its new key features? Check our new CPMS quick guides !

Next month be involved in Rare Disease Day 2023!

2023-01-30

The Rare Disease Day team has led to your disposition, material and handbooks you can use to build awareness.

RADeep last press release is available!

2023-01-29

Discover the lasts news about this project!

The 2023 EURORDIS Photo Award finalists have been selected

2023-01-29

Vote for your favourite photo!

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.

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 on ENROL, the European Rare Blood Disorders Platform.

The ERN Preceptorship experience in the CUB-Hôpital Erasme

2023-01-23

Discover the experience of the coordinators and the participants!

The EURORDIS Exchange of good practice webinar is now available!

2023-01-18

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

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

2022-12-27

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

Sickle Cell Disease Patients Conversation Group With A Psychotherapist

2022-12-27

The experience of the pilot had in Spain via the Patients Association ASAFE.

The RE(ACT) Congress & IRDiRC Conference

2022-12-27

The event aims to bring together scientific leaders and experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss rare diseases research policies.

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

2022-12-26

Discover the experience of the coordinators and the participant!

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

2022-12-22

Use the code "REACTXMAS".

Happy Holidays and Happy New Year 2023!

2022-12-22

May the peace and joy of the holidays be with you today and throughout the new year.

Discover SYNTHEMA!

2022-12-18

The project aims to create a hub to develop and validate Artificial Intelligence techniques for anonymization and synthetic data generation in rare hematological diseases.

Registration to the EURORDIS Black Pearl Awards is now open!

2022-12-16

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

The EHA2023 Hybrid Congress will be held next June!

2022-12-16

Online registration will open in January 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!

Discover how to get involved in Rare Disease Day 2023

2022-12-11

Do not wait until the 28th February to participate. Do it right now!

Attend to the EJP RD ERN Workshop: RARE TOGETHER!

2022-12-07

The in-person event will take place on 8th – 9th May 2023 at Van der Valk Hotel in Nijmegen-Lent, The Netherlands.

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 currently active online until December 23 to answer your questions, comments and support you during the journey.

Last uptade on RADeep

2022-12-05

The first meeting of the Data Access Committee in Barcelona.

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 this preceptorship!

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 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 their participation!

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 do not miss this opportunity!

Join IRDiRC's Therapies Scientific Committee!

2022-11-18

Submit your application before 16th of December 2022.

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

2022-11-18

Submit your proposal before 1rst of December 2022.

The EJP RD Joint Transnational Call will be launched soon!

2022-11-10

Attend the information webinar next 15th December.

The ERICA "ERN Data Management Strategy Multistakeholder Workshop"

2022-11-01

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

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.

Participate in the new edition of EURORDIS Photo Award!

2022-10-31

Submit your proposal before 22nd January 2023.

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 December 9, 2022.

New EJP RD video now available

2022-10-26

Visit the EJP RD YouTube channel to watch it!

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 and 24th of November and 1st December 2022, has been supported by ERN- EuroBloodNet

The Thalassaemia International Federation 2021 Annual Report is now available!

2022-10-18

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

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.

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 of November, has been supported by ERN-EuroBloodNet

Last call for EJP RD Research Mobility Fellowships!

2022-10-04

Participants should acquire new competences and knowledge related to their research on rare diseases, with a defined research plan and demonstrable benefit to the ERN of the home and/or host institution.

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 will be covered!

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 will be covered!

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 will be covered!

ERN-EuroBloodNet SCD Patient Educational Session at ASCAT October 2022

2022-09-29

A new edition of the educational program for people living with SCD is upcoming!

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 December 2022.

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 this preceptorship (costs covered).

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!

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 Vall d'Hebron University Hospital.

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 bodies, patient groups, biotech and pharmaceutical industry, public and non-for-profit organizations, clinicians and scientists.

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 join the program!

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 to a ERN-EuroBloodNet Member or Affiliated Partner join the program!

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 relevant topics are invited to apply until October 1st.

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

2022-08-31

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

The application period for the EHA Reseach Grants is opened!

2022-08-31

EHA Members or Guests are invited to apply before December 15, 2022 at 12:00 (noon) CET.

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.

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 Hôpital Saint-Louis. Welcome on board!

Preceptorships, another good way of learning

2022-08-29

ERN Exchange Mobility Program, a unique opportunity to benefit from training in a specialized institution.

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 doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

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 submit it before 4th September!

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 launched in next months!

Extension of ERN-EuroBloodNet Members’ Areas of Expertise

2022-08-03

HCPs have the possibility to request an extension of their disease coverage!

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 key actions in the field of rare hematological disorders.

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.

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 autumn.

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 invited to submit their proposals.

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 and press releases published between 2019 and 2021.

ERN-EuroBloodNet at the EHA2022 Hybrid Congress 2022

2022-07-03

View the sessions available at the EHA2022 Congress platform to learn about the latest in the field of hematology until August 15, 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

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

2022-06-30

The IMT, the library of translational medicine resources on Rare Diseases, aims to help researchers to overview the communities that are available to help them.

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!

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 of the European Rare Disease Research Coordination and Support Action (ERICA).

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 12-15 at the iCAN Summit.

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 those postcards with the things SCD has taught them about themselves, others or life in general - with an emphasis on positivity. Let's celebrate this day!

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 October 22nd to 24th, 2022.

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 ERICA.

The ERN-EuroBloodNet will be present at the EHA2022!

2022-06-03

Do not miss the opportunity to stay updated on the last results on Rare Haematological diseases.

Clinical Patient Management System for Virtual diagnosis

2022-06-02

Be part of the CPMS experts to obtain and provide support to the diagnosis and treatment of rare hematological patients.

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 for the Study of Iron in Biology and Medicine (BIOIRON Society), coordinated by Domenico Girelli, proposes a new definition and classification of Hemochromatosis (HC).They are intended to be of practical help even for nonexpert clinicians, avoiding delays in diagnosis and treatment, whenever a detailed molecular characterization of HC is not readily available.

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 co-organized by Orphanet.

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 an in-person event with multiple ways of networking

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 - 5th at the Hotel Excelsior in Bari, Italy.

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 co-coordinator, Prof. Béatrice Gulbis.

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 from among the applicants will be informed of their selection on June 2nd.

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!

CALL FOR PARTICIPANTS – Preceptorship on Rare Haemolytic Anaemia in Laboratories!

2022-05-11

Members and Affiliated Partners are invited to take part to this preceptorship (costs covered).

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 view them!

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 of systemic amyloidosis: ATTR (hereditary and wild-type), AL (light-chain), AA and less frequent forms.

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

2022-04-30

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

The ECRD2022 registry is still open!

2022-04-28

The 11th edition will be celebrated next summer, 27th June - 1st July 2022.

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 Lepore may be feasible in an earlier time of pregnancy by analysing the fetal DNA obtained by nucleated fetal cells present in celomatic fluid

ERN-EuroBloodNet will celebratate the 2022 World Sickle Cell Day!

2022-04-25

Are you living with SCD as patient or caregiver and you would like to participate to the campaign? Read how to in this article.

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 you!

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 - 1st July 2022.

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 ERN-EuroBloodNet, is the author of the recently published article on HemaSphere Journal.

Explore the Rare Diseases Clinical Trials Toolbox!

2022-03-22

The Rare Diseases Clinical Trials Toolbox has been developed as a practical aid for developers of clinical trials on medicinal products for human use regardless of therapeutic area.

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!

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 a limit of €25,000.

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 attended the introductory meeting!

All 24 ERNs united to help Ukrainian people with rare diseases

2022-03-15

All 24 European Reference Networks (ERNs) launch a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.

Kick-off meeting of ERICA WP3 Patient Centred Expert Working Group

2022-03-10

On the 8th and 10th of March it has been held the Kick-off Meeting of the ERICA WP3: during the 2 sessions the team and participants have discussed about PROMs for Rare Diseases and how to build an accessible repository.

"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.

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 (ISS) in close collaboration with EJP-RD task partners

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 presentations and discussions on different areas of interest.

EJP RD has launched the FAIRopoly!

2022-03-07

The game illustrates the FAIRification steps followed by the ERNs registries to make their data more findable, accessible, interoperable and reusable.

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 Disease Day 2022.

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 in Ulm over three days from April 28th-30th.

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 into three groups based on six parameters of phenotype severity.

ERN-EuroBloodNet supports Rare Disease day 2022

2022-02-28

Today, 28th February, the ERN-EuroBloodNet wants to contribute to the International Rare Disease Day by giving voice to RD patients, spreading patients' needs and expectations!

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

2022-02-28

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

EJ PRD has announced the official launch of their Instagram account

2022-02-25

On Rare Disease Day 2022, Prof. Bloom will take over their Instagram and Twitter accounts and post stories relating to EJP RD as well as the important advocacy work that she's engaged in.

"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 and the European Hematology Association (EHA) Guidelines Committee.

Registry to the EHA2022 Congress is now open!

2022-02-22

The first hybrid edition of the EHA Congress will be held in Vienna from 9th to 17th June 2022.

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 PVRL patients, Denis Malaise, Ophthalmologist, Alexandre Matet, Ophthalmologist, Nathalie Cassoux, Ophthalmologist and Carole Soussain, Hematologist, has performed a study of the state of the art of management of PVRL across Europe.

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.

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 data ecosystem for rare diseases to expedite the effective development of new therapies.

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 96 full members and 7 affiliated partners.

SCD Patients’ Educational Session at ASCAT 2022 January

2022-02-01

The third edition of SCD Patients Therapeutic Educational Session at International Congress has just finished.

Participate in The Black Pearl Awards 2022!

2022-01-31

The online ceremony will be held on Tuesday, 8th February 2022!

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 are available on the Rare Disease Day website for free.

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 by the ERN-EuroBloodNet in collaboration with the EBMT will be launched in February

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 creation of the new Guideline on Adult Burkitt Lymphoma

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.

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 collaborate before the 14th of February 2022.

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), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA).

Apply to the EJ PRD Joint Transnational Call 2022!

2021-12-31

Submit your pre-proposal before 16th February!

ERN-EuroBloodNet at the 63RD ASH Annual Meeting and Exposition!

2021-12-30

Two projects carried on in ERN-EuroBloodNet have been presented during the 2021 edition.

ASCAT 2022 will be held next January!

2021-12-29

The 17th edition is co-organized by the European Heamatology Association (EHA), the British Society of Haematology (BSH) and Annual Academy of Sickle Cell and Thalassaemia Conference (ASCAT).

EURORDIS has opened the Patient Advocate Fee-Waiver Programme!

2021-12-29

The selected applications will obtain fee waivers to attend the online ECRD!

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

2021-12-29

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

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 and their families will be launched in January 2022!

Happy Holidays and Happy New Year 2022!

2021-12-23

From the ERN-EuroBloodNet Coordination team, we send you our best wishes for the Holiday Season and the upcoming New Year!

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 and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.

Participate in The Black Pearl Awards 2022!

2021-12-15

The online ceremony will be held on Tuesday, 8th February 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 an effective collaboration on a common interdisciplinary research project.

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 on March 4th - 5th, 2022 at the University Hospital Nice, Pasteur 2 Hospital in Galet, Nice, France.

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 results obtained in these two studies focused on Rare Haematological disorders!

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 Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC).

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 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.

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 you need to get familiar with the CPMS and get updated on its new key features? Do not miss this Webinar!

EHA & ERN-EuroBloodNet Spotlight on Castleman Disease

2021-11-30

An educational online program on Castleman Disease organized by EHA and ERN-EuroBloodNet will start in January 2022!

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 their participation!

Participate in the EURORDIS Photo Award!

2021-11-18

Send your photo before 16th January 2022!

The EJP RD Joint Transnational Call 2022 has been pre-announced!

2021-11-16

The call aims to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients.

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 December

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 CEST!

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 of November, has been supported by ERN-EuroBloodNet

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 learn about the ways in which EJP RD can help your proposal!

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 and educational needs before November 30th 2021.

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 doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

Two new articles published on the SCD Patients’ Priorities Blog

2021-10-15

Read the two interesting articles published on the blog: “Why be a patient advocate?” and “Tips for Sickle Cell Warriors when traveling”

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 18:00 – 19:00 CEST and will be provided in English and French and will be simultaneously translated into English, French, German, Italian, and Spanish.

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 clinicians affiliated to ERN- Full  Members or - Affiliated Partners in relevant topics on research in rare diseases.

GenoMed4All – Patient Engagement e-Workshop

2021-09-30

GenoMed4All – A meeting with Myelodysplastic Syndromes, Multiple Myeloma and Sickle Cell Disease European patients’ associations

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 to implement the CPMS customization and consolidate the EuroBloodNet eLearning platform

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 miss it!

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 clinicians affiliated to ERN- Full  Members or - Affiliated Partners in relevant topics on research in rare diseases.

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 study the role of genetic modifiers in hemoglobinopathies” has been recently published by the American Journal of Hematology

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 key actions in the field of rare hematological disorders.

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 two days 18th-19th.

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 and 24th of November, has been supported by ERN- EuroBloodNet

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!

ERN-EuroBloodNet webinars for health professionals will continue in September!

2021-08-03

After the summer break, four webinar programs will resume. Have a look at the program!

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

2021-08-01

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

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 September

The nomination period of the EURORDIS Black Pearl Awards is open!

2021-07-23

If you have a star candidate of the rare disease community, do not hesitate to submit it!

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 EuroBloodNet’s EDU YouTube channel

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 1st in Athens, is open to PhD students and other young scientists working in this field

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 and 24th of November, has been supported by ERN- EuroBloodNet

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 be held next 1st July 2021 at 17pm CEST

"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 the translation of research tools to diagnostic applications

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 collaboration EJP-RD task partners

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 links to the corresponding SCD ERN-EuroBloodNet actions!

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 links to the corresponding SCD ERN-EuroBloodNet actions!

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 2021 from 09:30 to 17:00 CET.

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 EU, Member States and relevant stakeholders is important, with a particular focus on the interests of patients

The ERICA kick-off meeting has been held!

2021-05-28

The different working packages have been presented on the last 27th and 28th May during the The European Rare disease research Coordination and support Action (ERICA) kick-off meeting.

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 launched

EJP RD's ERN Workshop: "Clinical Research: The Basics & Beyond"

2021-05-21

The workshop is open by prior registration and selection to medical specialists affiliated to an ERN Full Member or Affiliated Partner institution and who have a special interest in clinical research with databases

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 Focus for Patients Organizations on Cutaneous Lymphoma has been published on ERN-EuroBloodNet EDU YouTube Channel

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 are now published on the YouTube Educational Channel of the ERN, EuroBloodNet's Edu

The Sickle Cell Disease Patients' Priorities Blog has been launched!

2021-04-19

We invite everyone with sickle cell disease to send us entries for the blog

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 start the 26th of April

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 the manuscript that comprises the analysis of the actual state and future of the ERNs

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 of Dominant Beta-Thalassemia and Unstable Hemoglobinopathies in Five Clinical Cases” has been recently published. Part of the team is composed by three different ERN-EuroBloodNet members.

Newborn screening for sickle cell disease in Belgium

2021-03-28

A request from Belgian SCD patients advocates’ group

Topic on Focus: Thrombotic Microangiopathies webinars received official CME accreditation!

2021-03-17

Webinar Program for health professionals named “Topic on Focus: Thrombotic microangiopathies” established in collaboration between EuroBloodNet and the CNR-MAT, the French Reference Center for Thrombotic Microangiopathies, has been accredited with 11 CME by the European Board of Accreditation in Hematology!

The EJP RD Research Mobility Fellowships funding opportunity is now open!

2021-03-15

The call aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence

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 and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence

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 European reference networks after Brexit" has been published in the Lancet

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

The EJP RD Rare Disease Day Video is online!

2021-03-01

Watch EJP RD contributors answer the web's most search questions about rare diseases!

Advances in Prenatal Diagnosis of monogenic diseases : “Coelocentesis”

2021-02-26

"Embryo-fetal erythroid cell selection from celomic fluid allows earlier prenatal diagnosis of hemoglobinopathies" the study coordinated by the ERN-Eurobloodnet member Prof. Aurelio Maggio, in collaboration with the "Franco e Piera Cutino" Foundation

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

2021-02-26

Subscribe to the newsletter and follow us on Twitter, LinkedIn, Facebook and YouTube!

New comprehensive webinar programs targeting patients or patients’ organizations are coming

2021-02-26

Topic on Focus on Cutaneous Lymphoma (CL) for POs and a general program on Myelodysplastic Syndrome (MDS) for patients and their families

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 Rare Disease in Padova (Italy) has organized the Annual Convention on Rare Diseases, a 4 day event in which several conferences will take place with the participation of ERN-EuroBloodNet

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 microangiopathies” has been established as a result of fruitful collaboration between EuroBloodNet and the CNR-MAT, the French Reference Center for Thrombotic Microangiopathies, and will start the 3d of March. The registration is open now!

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 children with Sickle Cell Disease, as a highly specialized procedure required for the adequate management of these patients.

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 to ERN- Full  Members or Affiliated Partners in relevant topics on research in rare diseases

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 microangiopathies” has been established as a result of fruitful collaboration between EuroBloodNet and the CNR-MAT, the French Reference Center for Thrombotic Microangiopathies, and will start the 3d of March.

EuroBloodNet’s initiatives for Cutaneous Lymphoma community in 2020

2021-01-26

In 2020 EuroBloodNet has initiated several important activities and initiatives which have a great impact on cross border community of health professionals, patients, and patients' organizations in the field of CL!

Update on the Establishment of the European Network of Sickle Cell Disease Patients Organizations

2021-01-24

Belgium has elected its National Representatives

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 CET

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 community the ongoing actions and results in the last year as well as upcoming new projects.

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

2020-12-31

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

EURORDIS Recommendations to achieve a mature ERN system in 2030

2020-12-30

The paper, and the accompanying Policy Brief, reviews progress achieved so far and presents EURORDIS vision of a mature European Reference Network system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment.

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 Hôpital Saint-Louis. Welcome on board!

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 implement the present internal (open to EJP RD beneficiaries and their linked third parties) call for collaborative innovation projects to support collaborations among groups of experts (methodological experts, clinicians, patients...) .

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 of the 8-session program Topic on Focus: Cutaneous Lymphoma, provided by Prof. Dr. Pietro Quaglino and Prof. Dr. Evangelia Papadavid

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 are available on EuroBloodNet’s EDU channel

Important change in the webinar program Topic on Focus: Cutaneous Lymphoma

2020-11-16

The 14th of December will take place the last Topic on Focus: Cutaneous Lymphoma webinar, where the sessions on New therapeutic developments I and New therapeutic developments II will be combined in one

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, including powerful High-Performance Computing facilities, hospital registries, data processing tools, and pre-existing repositories towards facilitating personalised medicine in common, rare and ultrarare haematological diseases to demonstrate the versatility and utility of the solutions. For doing this, GENOMED4ALL counts with the participation from ERN-EuroBloodNet

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 of November, has been supported by EuroBloodNet

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 ties with existing European and international infrastructures and consortia involved in rare disease research and innovation. ERN-EuroBloodNet will coordinate WP3-Patient Centred Research in close collaboration with Orphanet.

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 compiled for the six subnetworks, from which 68 have been classified on Quality Domains. Check now the new repository released, including a search tool for their findability on Subnetwork, Disease group, Scope and Purpose and Rigour of Development approach!

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 the second year the perfect opportunity for patients to experience how important is to participating in Research’s Agenda, while demonstrated the that the medical profession is willing to change and listen to the patient voice.

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 of Primary vitreo-retinal lymphomas and intraocular involvement of primary central nervous system lymphomas, and how these lymphomas are diagnosed, treated and monitored in “real life”.

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 added value of patient partnerships in research proposals

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 on Intensive Care Fundamentals for Healthcare Professionals working at hospitals with Intensive Care Units, in all 27 EU Member States and the United Kingdom.

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 Spanish that will take place each Wednesday of next November at 16:00 pm (CEST).

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 National Representatives

The ERN-EuroBloodNet 4th Board of the Network meeting

2020-09-28

Next October will take place the 4th ERN-EuroBloodNet BoN ONLINE meeting

Last advances in Congenital Dyserythropoietic Anemias

2020-09-22

A review of Congenital Dyserythropoietic Anemias has been recently published by EuroBloodNet members Achille Iolascon, Immacolata Andolfo and Roberta Russo

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. Werner Kempf is now available on EuroBloodNet's EDU YouTube channel.

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 of Primary vitreo-retinal lymphomas and intraocular involvement of primary central nervous system lymphomas, and how these lymphomas are diagnosed, treated and monitored in “real life”.

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 up the eHealth Digital Service Infrastructure for the ERNs, including the Clinical Patient Management System for interprofesional consultation of complex cases

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 take place another webinar session on Cutaneous Lymphoma “CD30+lymphoproliferations” provided by Prof. Dr. Werner Kempf.

The EuroBloodNet Thursdays Webinars program restarts after the summer break!

2020-08-31

Next Thursday 17th September with a session called “Genetic counselling of Hemophilia” provided by Prof. Dr. Patricia Aguilar Martínez.

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 of ERN-EuroBloodNet, promoted by Vall d’Hebron University Hospital and Vall d'Hebron Research Institute

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 the field of Acute Lymphoblastic Leukaemia, Pyruvate Kinase Deficiency, Hemochromatosis, Bone marrow failures, Chronic Lymphocytic Leukaemia, Cutaneous T Cell Lymphomas, Congenital dyserythropoietic anemias and Myelodysplastic Syndromes

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. Dr. Graça Porto, “'Bone marrow failures genetic diagnostic" provided by Prof. Dr. Regis Peffault de Latour and "How to approach older patient with Chronic Lymphocytic Leukemia" provided by Prof. Dr. Dominique Bron are now available on EuroBloodNet’s EDU YouTube channel.

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 meeting organized by the European Red Cell Society

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 Prof. Dr. Nicolas Boissel and “Pyruvate Kinase Deficiency Clinical Management” provided by Dr. Eduard J. van Beers are now available on EuroBloodNet’s EDU YouTube channel.

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 of Primary vitreo-retinal lymphomas and intraocular involvement of primary central nervous system lymphomas, and how these lymphomas are diagnosed, treated and monitored in “real life”.

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 to assess the strengths and weaknesses of the two regulations.

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 by Prof. Dr. Rein Willemze and "Mycosis Fungoides" provided by Prof. Dr. Maarten Vermeer and "Sézary Syndrome" provided by Prof. Dr. Martine Bagot and Prof. Dr. Pietro Quaglino are now available on EuroBloodNet's EDU YouTube channel.

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 of the COVID-19 pandemic. First relevant outcomes will be reported by October

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 of Primary vitreo-retinal lymphomas and intraocular involvement of primary central nervous system lymphomas, and how these lymphomas are diagnosed, treated and monitored in “real life”.

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

2020-07-28

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

Submit your nominations for the 10th edition EURORDIS Black Pearl Awards!

2020-07-27

The awards categories and nomination criteria have been presented for the 10th edition of the EURORDIS Black Pearl Awards

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 ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders. Check out the outcomes and slides from the meeting!

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 by Prof. Dr. Rein Willemze and "Mycosis Fungoides" provided by Prof. Dr. Maarten Vermeer are now available on EuroBloodNet's EDU YouTube channel.

Two new ERN reportages launched by the European Commission!

2020-07-23

Two reportages have been launched by the European Commission to support and disseminate the beneficious work of the 24 different European Reference Networks

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 of Primary vitreo-retinal lymphomas and intraocular involvement of primary central nervous system lymphomas, and how these lymphomas are diagnosed, treated and monitored in “real life”.

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

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 Cutaneous Lymphoma is now available on EuroBloodNet's EDU YouTube channel.

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 guides” to support users in accessing and working in the CPMS by providing them with simple and concrete key steps, discover them!

EuroBloodNet's EDU YouTube channel has been launched!

2020-07-01

We are immensely proud to inform you all that EuroBloodNet has its own educational YouTube channel.

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 treatments for rare diseases

Find the Haemoglobinopathy Variant Curation Expert Panel recognised by ClinGen!

2020-06-22

The Haemoglobinopathy Curation Expert Panel (VCEP), is a joint international effort between the ITHANET portal and the Global Globin Network of the Human Variome Project counting with the participation of ERN-EuroBloodNet members. Discover them!

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 outcome set (COS) to assist researchers in selecting outcomes for future trials and promote harmonization of NHL studies

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 Awareness' Day (WSCD2020). ERN-EuroBloodNet is glad to participate to this event by creating two patients' testimony videos. Check on them on ERN-EuroBloodNet Youtube channel!

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 Vall d'Hebron University Hospital. Welcome on board!

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 an umbrella for both new and already existing registries on rare hematological disorders. Register to the online Kick off meeting next 2nd July!

ELIXIR publishes 10 rules for making training materials FAIR

2020-05-26

The implementation of the 10 rules allows the FAIRification of the training material, making them Findable, Accessible, Interoperable and Reusable

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 Association Annual Congress, which will take place online June 11-21, 2020

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 of the first International survey together with recommendations derived from the survey collecting 2013 respondents from 66 countries

"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 EBAH to the participants attending to the full program

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

2020-04-28

Subscribe to the newsletter and follow us on Twitter, LinkedIn and Facebook!

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 series of Webinars tackling specific conditions. The first Focus will be on Cutaneous Lymphoma starting from May!

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 2020 and shape the future for people living with a rare disease! Register now!

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 COVID-19 to share clinical information for supporting daily medical practice and allow interprofessional consultations

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 European Hematology Association (EHA) will be replaced by a virtual edition.

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 discussion on health data and ERNs that will allow the Networks to have a long-term strategy that is aligned with their needs and ambition

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 2019 to discuss aspects that should be considered by all stakeholders to facilitate the use of data collected by cancer registries, as core data elements, quality assurance measures among other considerations.

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 of the European Network of Sickle Cell Disease Patients Organizations” will be presented next 14-16 May

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 wide range of existing policies and schemes, to enhance cross-border healthcare for patients suffering from COVID-19, but also for other pathologies, with a view to relieve the burden placed on health systems.

Have you checked out "EuroBloodNet Thursdays Webinars" Program? Register now!

2020-04-06

Webinar program is mainly addressed on very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines

IthaScore, a gene-ranking metric for haemoglobinopathy-specific phenotypes

2020-04-03

The ITHANET portal is an expanding resource for clinicians and researchers dealing with haemoglobinopathies by integrating information on database of variations (IthaGenes), epidemiology (IthaMaps) and HPLC data (IthaChrom), and also now gene-ranking metric IthaScore

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) in patients affected by Rare Hematological Diseases may be challenging given the rapid spread of the pandemia and limited literature so far

COVID-19 infection and Red Blood Cell Disorders

2020-03-20

The correct treatment and management of these patients may be challenging given the rapid spread of the pandemia and lack of literature so far. At this crucial stage, efforts are being devoted by different initiatives for the generation of indications

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 series of Webinars tackling specific conditions. The first Focus will be on Cutaneous Lymphoma starting from 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 line with WHO guidelines, the upcoming ECRD will now take place ONLINE on 14-16 May

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 EU Third Health Programme (2014-2020) and is exploring the options to set up a European expert network on rare diseases in the context of mobility and globalisation, with the purpose of improving healthcare provision. The study takes into account different operational, funding and sustainability criteria

Rare Disease Day 2020 is almost here! Get involved!

2020-02-25

Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

ERN-EuroBloodNet new social networks! Follow us on Facebook and Linkedin!

2020-02-24

In order to increase the outreach of network actions and results, we are glad to announce the release of two new ERN-EuroBloodNet communication channels through Facebook and Linkedin

2020 Belgian meeting on Red Blood Cell disorders for scientists and patients will be held next 5th March!

2020-02-19

Registration is open!

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 a Cutaneous Lymphoma comprehensive webinar program addressed to patients associations and patients advocates that will be tailored based on the results

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 and Julia Zajac is based in Hôpital ERASME, welcome on board!

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 of the disease: prevention (lifestyle, pollution, vaccination), diagnosis, treatment and survivorship.

New search tool for ERNs on the Europa website!

2020-02-04

Commission website (Europa) now hosts a searchable interface with details about ERNs for the public to search, including multi-lingual factsheets about ERNs and locations of members and partner centres.

"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 the coordination of Prof Regis Peffault de la Tour. 3 participants from Czech Republic, Lithuania and United Kingdom have benefited from this short stays and have shared with us their own experiences.

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 and extra-cellular environment) held its kick off meeting 24-26 January 2020 in Amsterdam

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 and 14 November in Vall d'Hebron University Hospital, Barcelona, with the participation of more than 80 attendants and important new projects proposed for the upcoming period, check them!

Find out the European Joint Programme (EJP) on Rare Diseases calls!

2020-01-28

EJP fosters annual Joint Translational Calls, fund Networking Support Scheme and Rare Disease Research, find out the open and upcoming calls!

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 umbrella for both new and already existing registries on rare hematological disorders, aiming at avoiding fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform.

Rare Disease Day 2020: One month to go! Get involved!

2020-01-17

Rare Disease Day represents the greatest occassion of raising global awareness amongst the general public and decision-makers about rare diseases

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 January in Amsterdam, where ERN-EuroBloodNet presented the European Network of SCD Patients Organizations. ERN-EuroBloodNet is very proud of being part of this new start!

"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, talks about Digital solutions remarking the importance of ERNs

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 knowledge on novel strategies to foster solutions of undiagnosed RD cases. Registration is open until 26th January!

EuroBloodNet Thursdays Webinars Program starts in January 2020! Register now!

2019-12-20

Webinar program is mainly addressed on very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines

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!

Congratulations to the winners of EURORDIS Black Pearl Awards 2020!

2019-12-12

The recipients of the EURORDIS Black Pearl Awards 2020 will be awarded at the official ceremony at the Hotel le Plaza Brussels on 18 February.

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 clinical units of European hospitals with appropriate expertise to join the current networks. The full assessment process will now commence and is expected to last a year

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 that shows some of the biggest trends in the transformation of the healthcare systems and draws key conclusions from the Profiles

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 support provided to a ERASMUS student to benefit from cross-border mobility healthcare rights and the collaboration with EURORDIS for the establishment of the European Network of Sickle Cell Disease Patients Organisations

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 2020. Submission of poster abstracts is available until 10th February!

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 hematopoietic stem and progenitor cells (HSPCs) transduced ex vivo with a lentiviral vector encoding for the PK enzyme is now enrolling patients

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 the fundamental tools for a correct diagnostic and treatment approach to bone marrow failures, including AA and PNH in children, adolescents and adult patients.

“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 Hematology with the participation of 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 Hemoglobin Journal, including “EuroBloodNet: A European Reference Network for Rare Blood Diseases and a Model for Emulation”

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 Hospital, Barcelona

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 - ITN EVIDENCE (Erythrocytes properties and viability in dependence of flow and extra-cellular environment) which is already recruiting students

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 experience what Patient and Public Involvement is while demonstrated the that the medical profession is willing to change and listen to the patient voice.

EuroBloodNet is recruiting a full time position for CPMS helpdesk in Brussels!

2019-10-25

Application is open until November 15th

"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 the endorsement of ERN-EuroBloodNet

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 and will include Parallel sessions for active discussion on concrete projects.

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 environment (EVIDENCE) project is a Marie Curie – Innovative Training Networks, present your candidature until 31st December 2019!

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 to implement the CPMS customization and establish the EuroBloodNet eLearning platform

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 of the existing Networks, particularly from those Member States that are currently less represented.

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 4-year-old Finnish boy diagnosed with hypothalamic hamartoma.

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 successful completion of the EU Joint Action on Rare Cancers after three years of activity

"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 increase in the hemoglobin level in 50% of adults with pyruvate kinase deficiency

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 UNESCO, Paris

New Human Phenotype Ontology (HPO) release for September 2019 out now!

2019-09-06

HPO provides a standardized vocabulary of phenotypic abnormalities encountered in human disease, becoming the standard for phenotypic abnormalities by diverse groups such as international rare disease organizations or registries

European Commission public consultation: Horizon Europe Co-design and implementation

2019-09-05

The European Commission has launched an online public consultation on Horizon Europe to contribute to co-designing and help shaping the future research and innovation investment

New ePAG for rare bleeding disorders!

2019-09-04

We are very happy to announce that Baiba Ziemele has joined ERN-EuroBloodNet as the new European Patient Advocacy Group (ePAG) for bleeding disorders, welcome!!

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!

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 “ERN Assessment manual for applicants: operational criteria for the assessment of Healthcare Providers” and the “Specific criteria” documents have just been released by the EC for candidates to prepare their applications

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 cell and iron biology in relation to the erythropoietic differentiation process

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 the last ERN Coordinators and Member State meetings that took place in Brussels on the 24 and 25 June

Nominations for the EURORDIS Black Pearl Awards 2020 are now open!

2019-07-09

Awards are presented to patient advocates, organisations, policy makers, scientists, companies and media for their major achievements and their outstanding commitment to the rare disease cause.

First issue of the ERN Newsletter has been launched!

2019-07-08

The European Commission has produced the ERN newsletter aiming to inform the ERN community and interested external stakeholders on the last developments of the ERNs ecosystem while promoting cross-ERNs or cross-Member States ideas and experiences

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 has joined ERN-EuroBloodNet as the new European Patient Advocacy Group (ePAG) for Hemochromatosis, welcome on board!

Sickle Cell Disease World Day 2019!

2019-06-26

"It is very important to have the voice from politics, authorities, stakeholders, but also from the patients’ themselves so they can meet together and share the actions they want to perform regarding the disease" B. Gulbis, EuroBloodNet co-coordinator

2nd ERN-EuroBloodNet interactive session at EHA Congress

2019-06-18

The 2nd interactive session at EHA Congress took place last 14th June with more than 50 members and patients representatives, thanks to all!

ERN-EuroBloodNet deliverables from 2nd year of implementation already available!

2019-05-12

All the activites and results achieved during second year of ERN-EuroBloodNet implementation are gathered in its second annual report

5th ERN-EuroBloodNet Scientific and Strategic Board Meeting

2019-04-10

5th ERN-EuroBloodNet Scientific and Strategic Board Meeting was held last 5th April in Brussels for the analysis of the current state of the art of the different actions implemented by the network and discuss next steps

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 cures are available to people living with a rare disease, if they are accessible, and how they experience their treatment and cure. Survey is open until 30th April!

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 has been produced by the EC and translated to all EU languages. Moreover a new video will be also soon released.

The European Platform on Rare Disease Registration has been launched!

2019-03-11

Information about rare disease patients is spread in hundreds of registries across Europe. The EU Rare Disease Platform will make registries' data searchable at EU level and promote the standardization of data sharing.

Rare Disease Models and Mechanisms-Europe registry open for registration

2019-02-19

"Solve-RD – Solving the unsolved Rare Diseases" is a large European research project collaborating with ERNs to improve the diagnosis of rare diseases

EURORDIS Black Pearl Awards 2019

2019-02-15

The 8th edition of the EURORDIS Black Pearl Awards took place on 12 February 2019 in Brussels. Congratulations to the winners!

#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 London, support rare hematological disease communities in the UK

Rare Disease Day 2019 "Bridging health and social care": Get involved!

2019-01-30

Nex 28th February, the 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease face every day.

Cross-border healthcare: are EU citizens aware?

2019-01-25

"As legislation that clearly impacts EU citizens, it should be better known", Andrzej Rys, Director responsible for health systems, medical products and innovation, Directorate-General for Health and Food Safety, European Commission

"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 under the endorsement of the network and with the participation of a high number ERN-EuroBloodNet members representatives and experts

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 21-22 November in Brussels

"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 objective of this conference is to translate recent, novel data from basic research on the origin and developmental control of mega/erythroid progenitors in haematopoiesis to clinical practice

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 consolidation with the presentation of 16 concrete projects focused on the different Transversal Fields of Action and rare hematological diseases areas where members are already actively involved

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, regional and national healthcare providers to make ample use of this unique resource.

"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 under the endorsement of the network and with the participation of a high number ERN-EuroBloodNet members representatives and experts

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 on the Orphanet Journal of Rare Diseases including all the abstracts submitted to the congress

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 and coordinator of the International Conference of Rare Diseases and Orphan Drugs (ICORD) from January 2019

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 attend, please contact us!

ERN-EuroBloodNet Disease Search Tool release!

2018-10-10

The engine searches experts based on the information gathered through the Experts’ profile, offering the possibility of searching either by specific disease through the ORPHA classification, or by subnetwork, while including different additional filters

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 by ACSA, being one of them also selected for the on-site audit. Congratulations to all!

4th ERN-EuroBloodNet Scientific and Strategic Board Meeting

2018-10-02

The 4th ERN-EuroBloodNet Scientific and Strategic Board Meeting was held last 27th September in Brussels for the presentation of the state of the art of network implementation and discussion of next steps

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 representatives, policy makers, national authorities, scientific communities and patients associations, the Conference represents the perfect environment for brainstorming

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 an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research.

Joint Action on Rare Cancers (JARC) and ERNs

2018-08-21

JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers

RD-Connect announces educational webinar series for ERN Stakeholders

2018-08-20

RD-Connect is organising a series of webinars aiming to train ERN members on RD-Connect tools designed to help clinicians and researchers study and diagnose rare diseases.

ERN video clip now available in all EU languages

2018-08-19

The European Reference Networks video is now available in all EU languages (except Gaelic) and Norwegian!

ERN-EuroBloodNet interactive session at EHA Annual Congress

2018-06-26

Taking advantage of the biggest congress on hematology in Europe, ERN-EuroBloodNet members representatives and patients' advocates attending the congress met together during an interactive session on Friday 15th June

Health policies in EU budget 2021-2027

2018-06-04

The European Commission adopted last May a legislative proposal for a new European Social Fund Plus (ESF+) Programme

Release of "Plaza" at the ERNs Collaborative Platform

2018-06-04

'Plaza' is the Spanish word for city square and this is exactly what we want it to be: a vibrant, central place in a community where people can come together, meet, connect and collaborate.

European Reference Networks one year anniversary

2018-03-12

ERNs after first year of activity

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 Day coordinated by EURORDIS

Rare Anaemias Disorders European Epidemiological Platform (RADeep)

2018-01-15

The umbrella for both new and already existing European patients’ registries in rare anaemias

Winners of the EURORDIS Black Pearl Awards 2018!

2018-01-15

Stars of the rare disease community recognised for their efforts through the EURORDIS Black Pearl Awards.

ERN-EuroBloodNet 1st Board of the Network meeting!

2017-11-20

The 1st BoN meeting was successfully held last November 10th in Paris

ERN-EuroBloodNet Dissemination material is already available!

2017-11-13

Check the new leaflet and flyer!

ERN-EuroBloodNet 2nd Scientific and Strategic Board Meeting

2017-09-12

The meeting was held in Brussels last 6th September

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 of the networks!

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 EHA congress for presenting what was agreed during the ERNs CG meeting and next steps discussion

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 coding situations.

Watch the European Reference Networks video, flyer and brochure!

2017-03-15

Share. Care. Cure.

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 the Kick off meeting held in Vilnius 9th March