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!

“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: coordination@eurobloodnet.eu