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!
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!
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.
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 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: coordination@eurobloodnet.eu
Keep informed about the latest information on Rare Hematological Diseases!
Discover more about the ERN-EuroBloodNet experience at the congress!
The MOOC will start on Monday July 8th and registration is now open!
"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.
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.
Starting on 18th of September, the program contains 6 sessions for researchers and practitioners from the Health care Community.