ERN-EuroBloodNet, the ERN on Rare Hematological Diseases (RHDs)

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

On 3 October 2023, the 24 ERN Coordinators, ePAGs representing their ERN on the EURORDIS, ePAGs Steering Committee (Loris Brunetta & Jacqueline Dubow for the ERN-EuroBloodNet), and EURORDIS co-signed an Open Letter calling on EU institutions and national governments to stand by European Reference Networks.

Discover the Open Letter together with the Press Release from EURORDIS!

ERN-EuroBloodNet Meeting will be held on Thursday 13th of June at EHA Annual Congress in Madrid 2024!

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

We really hope to see you there: ERN-EuroBloodNet meetings are the best occasions to learn about the opportunities that the network can offer you, and how you could be involved. It is also a very good occasion to meet face-to-face, exchange on your needs and collect your inputs!

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

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. The manuscript is the result of the joint work within 12 EU Member States, a total of 26 ERN-EuroBloodNet health professionals and patients representatives have contributed.

Clinical Patient Management System (CPMS)

The Clinical Patient Management System (CPMS) is currently used by 122 ERN-EuroBloodNet users across 18 EU countries. 52 Panels have been opened so far in the platform from which 22 are closed, and 30 are still open for additional contributions. If you want to be part of this project, we recommend you to have a look at our website section where dedicated guides have been recently updated!

All 24 ERNs united to help Ukrainian people with rare diseases

All 24 European Reference Networks (ERNs) has launched 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. Please don't hesitate to contacting us for rare haematological patients in need of highly specialized diagnosis or treatment for their rare disease:


Keep informed about the latest information on Rare Hematological Diseases!

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

Starting on 18th of September, the program contains 6 sessions for researchers and practitioners from the Health care Community.

First International AL Amyloidosis meeting, for patients and doctors

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.

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.

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

The EJP RD End-user Training Webinar will be held on June 26 & the training for resouces June 28!

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