News | EuroBloodNet

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.

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