Highlights
Outcomes of the successful working days at the EHA 2025 Congress!
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.
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
Press&News
Keep informed about the latest information on Rare Hematological Diseases!
ERN-EuroBloodNet team was present at the RealiseD General Assembly Meeting 2026
The meeting was hosted by Teamit at the Recinto Modernista de Sant Pau, marking one year since the project's launch.
The ERDERA 2026 joint Transnational Call “Resolving unsolved cases in rare genetic and non‑genetic diseases” is open!
The deadline to submit pre-proposals is 12 February 2026
IRDiRC has recently launched a global call for experts
Submit by 20 February 2026 to join the dedicated Task Forces and Working Groups.
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 High-Level Meeting (HLM) on a European research and innovation ecosystem for rare diseases was held in Brussels from 9 to 11 December 2025.
Transition in Rare Diseases Workshop, 27-28 February 2026, Ghent, Belgium
This workshop will convene experts, patients, and stakeholders from across Europe to shape collaborative standards for the transition of rare disease care from pediatric to adult care.
Latest tweets
As leader of the Working Group 6 – “Boost real-world evidence generation”, Dr. María del Mar Mañú Pereira addressed the key challenges rare diseases face to generate RWE and highlighted the main calls of the Rare Disease Declaration.
— ERN EuroBloodNet (@ERNEuroBloodNet) Feb 12, 2026
ERN-EuroBloodNet was represented onsite by Dr. María del Mar Mañú Pereira, Scientific Coordinator and current Vice-Chair of the 24 ERNs, and Alba Albert Robledo, Scientific Project Manager.
— ERN EuroBloodNet (@ERNEuroBloodNet) Feb 12, 2026
On the first day, Maurizio Scarpa presented an overview of the recent #HLM.
✅The European Reference Network Coordinators’ Group Meeting was held this week, 10–11 February in Vienna, in a hybrid format, bringing together ERN coordinators and project managers from across Europe to reinforce collaboration within the #ERNs.
— ERN EuroBloodNet (@ERNEuroBloodNet) Feb 12, 2026
📊 Only 9 days left to apply!
— IRDiRC (@irdirc) February 11, 2026
IRDiRC CCC is seeking global experts for a Task Force on Optimizing Data Sources & Registries to accelerate rare disease treatment development.
Apply by 20 Feb 2026: https://t.co/CFIiqw46nj#IRDiRC #RareDiseases #RWE #CallForExperts pic.twitter.com/VctTaq4YIf
