Highlights
European Reference Networks (ERNs) are building Europe’s Rare Disease Ecosystem: 3 days of debate, 8 priorities, one shared Declaration, 30 million people living with a rare disease in Europe.
The EHA Congress is the largest hematology event in Europe, bringing together professionals, researchers, and stakeholders from across the field.
The 2025 edition was held in Milan, Italy, from June 12 to 15. ERN-EuroBloodNet had a strong presence at the event, featuring a dedicated booth, active participation in several oral and poster sessions, and the organization of the ERN-EuroBloodNet Board of Network (BoN) meeting.
2026 call for applications: Affiliated Partner within 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
Press&News
Keep informed about the latest information on Rare Hematological Diseases!
ERN-EuroBloodNet in Padua: two days of collaboration on networks and data
Co-Coordinator Dr María del Mar Mañú Pereira met representatives of 22 ERNs and spoke at the SYNTHEMA final event
ERN-EuroBloodNet and RADeep put mental health at the centre of the Patient Sessions at ASCAT 2026
For the eighth consecutive year, ERN-EuroBloodNet, together with RADeep, coordinated special sessions for people living with sickle cell disease (SCD) at ASCAT, this year dedicated to mental health and quality of life.
Save the Date – EURORDIS Black Pearl Awards 2027
The EURORDIS Black Pearl Awards 2027 will take place on Monday, 15 February 2027, at the Cardo Hotel in Brussels.
RiseMPN 2026 – Can we engineer disease trajectories in MPNs?
The event will take place on 6-7 November 2026 at the Courtyard by Marriott Rome Central Park in Rome, Italy.
New publication in The Lancet Haematology: "Integrating sexual health into sickle cell disease care
Born from the ERN-EuroBloodNet and RADeep Patients’ Sessions at ASCAT 2025, where 27 patients from 13 countries discussed sexual health
Latest tweets
🩸ERN-EuroBloodNet at the SYNTHEMA final event in Padova!
— ERN EuroBloodNet (@ERNEuroBloodNet) Nov 4, 2026
Yesterday, our Co-Coordinator Dr. María del Mar Mañú Pereira joined partners at the Università degli Studi di Padova for the SYNTHEMA final dissemination event.
#ERNs #ERNeu #RareDiseases #Synthema #EuroBloodNet
Greetings from Padua 🇮🇹
— @SYNTHEMA_EU Nov 3, 2026
The SYNTHEMA Symposium is underway! A full day ahead to share nearly four years of research on synthetic data and rare blood diseases.
Many thanks to @UniPadova, particularly Elisabetta Mezzalira and Raffaella Colombatti for the warm welcome! 🫶
📢Are you a member, Affiliated Partner or ePAG of ERN-EuroBloodNet? Register now for the upcoming ERN-EuroBloodNet Progress Meeting!
— ERN EuroBloodNet (@ERNEuroBloodNet) Oct 29, 2026
⭐Your participation counts! Attendance at this meeting also contributes to the performance scoring of your Centre.
eurobloodnet.eu/meetings/pro…
🚨Only a few days left to register for the second session of the Topic on Focus on Thrombotic Thrombocytopenic Purpura (TTP) for Patients!
— ERN EuroBloodNet (@ERNEuroBloodNet) Oct 29, 2026
Register now and don't miss this session: eurobloodnet.eu/education-2/…
#ERNs #ERNeu #TTP #Hematology #RareDiseases #EuroBloodNet
