During the EHA Congress, the ERN-EuroBloodNet meeting took place on 13 June 2024, focusing on "ERN-EuroBloodNet and ENROL Registry: Boosting data driven research and innovative therapies & fostering best practices and access to highly specialized care".
Interesting outcomes have been obtained from the discussions among the 88 attendants, from 45 ERN-EuroBloodNet Healthcare providers and 14 EU Member States. Discover all of them here!
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 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!
This report showcases major achievements and areas for growth after the first 5 years of evaluation
Block your agenda to attend the ERN-EuroBloodNet's event of every autumn!
The course endorsed by ERN-EuroBloodNet, addresses red blood cell pathology in an interdisciplinary manner
The course that will be held next 8th and 9th November 2024 in Rome, has been endorsed by ERN- EuroBloodNet.
The ERN-EuroBloodNet annual event at ASCAT highlights the crucial role of patient voices, especially youth advocates, in shaping the future of sickle cell transition care