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!
Stay tuned to our social media channels to not miss any details of the ERN-EuroBloodNet's autumn event.
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!
Learn more about Hypereosinophilic Syndrome (HES) through an accredited European online educational program, designed by EHA and ERN-EuroBloodNet.
Learn about Aplastic Anemia in Patients of All Ages by taking part to preceptorships
The Rare Disease Day team has led to your disposition, material and handbooks you can use to build awareness.
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.
Several actions to raise awareness have been organized around Europe.