EuroBloodNet - European Reference Network on Rare Hematological Diseases

26/11/2025

26/11/2025

On 17 November 2025, the European Commission released its first Monitoring Report on the 24 European Reference Networks ( ) — a landmark system connecting specialised centres across the EU and Norway to improve care for people living with rare, complex, and low-prevalence diseases.

📊 The report highlights significant progress: in six years, referrals to ERN-affiliated clinical centres increased by 160%, now managed across 1,606 expert centres in 375 hospitals in 27 countries. A clear sign of the value ERNs bring to patients and health systems alike.

Within this ecosystem, EuroBloodNet - European Reference Network on Rare Hematological Diseases, plays a crucial role in strengthening expertise across disorders such as , (SCD), and other —areas central to ’s mission.

For , these efforts translate into faster diagnosis, greater access to expert centres, and more consistent, high-quality care. For and healthcare systems, ERNs provide a framework for shared knowledge, harmonised practices, and stronger cross-border collaboration.

📄 Explore the full Monitoring Report here: https://health.ec.europa.eu/publications/european-reference-networks-monitoring-report-2025_en

26/11/2025

📢 Don't miss the 2nd Session of the EDITSCD & ERN-EuroBloodNet webinar series!

🎯​This series provides an in-depth exploration of gene therapy and genome editing approaches for Sickle Cell Disease ( ), combining fundamental concepts with cutting-edge clinical perspectives.

Developed in partnership with the EDITSCD Consortium, led by Annarita Miccio (Institut Imagine), the program benefits from the valuable insights of the steering committee and patient representatives from the European Sickle Cell Federation (ESCF).🤝​

💻Register now: https://eurobloodnet.eu/education-2/patients/webinars/editscd-ern-eurobloodnet-focus-on-genetic-therapy-for-people-living-with-scd/editscd-ern-eurobloodnet-focus-on-genetic-therapy-for-people-living-with-scd/2/session-2-basics-of-gene-therapy-with-lentiviral-vectors

14/11/2025

📢 Join us for the 2nd Session of the EDITSCD & ERN-EuroBloodNet webinar series!

We are pleased to announce the second webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”

🎯​This series provides an in-depth exploration of gene therapy and genome editing approaches for Sickle Cell Disease ( ), combining fundamental concepts with cutting-edge clinical perspectives.

Developed in partnership with the EDITSCD Consortium, led by Annarita Miccio (Institut Imagine), the program benefits from the valuable insights of the steering committee and patient representatives from the European Sickle Cell Federation (ESCF).🤝​

💻​This educational series includes 7 webinars and is hosted on Zoom, featuring live AI translation to ensure accessibility for all participants.

👉 Register now:
https://eurobloodnet.eu/education-2/patients/webinars/editscd-ern-eurobloodnet-focus-on-genetic-therapy-for-people-living-with-scd/editscd-ern-eurobloodnet-focus-on-genetic-therapy-for-people-living-with-scd/2/session-2-basics-of-gene-therapy-with-lentiviral-vectors

10/11/2025

📢​Last days to register for this week’s ERN-EuroBloodNet Thursdays Webinar!

These educational sessions are designed to foster interest in highly innovative topics and highlight the latest cutting-edge advances in Rare Hematological Diseases for healthcare professionals across Europe.

The series is an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).🌟​

🎙️ Speaker: Maarten Vermeer
👉Don’t miss it, secure your spot today! https://eurobloodnet.eu/education/thursdays-webinars/65/cutaneous-t-cell-lymphomas-bridging-gaps-in-therapy-and-patient-care

05/11/2025

🚨 Register now for the upcoming ERN-EuroBloodNet Thursdays Webinars!

These educational sessions are designed to foster interest in highly innovative topics and highlight the latest cutting-edge advances in Rare Hematological Diseases for healthcare professionals across Europe.

The are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).🌟​

🎙️ Speaker: Maarten Vermeer
👉Don’t miss it, secure your spot today! https://eurobloodnet.eu/education/thursdays-webinars/65/cutaneous-t-cell-lymphomas-bridging-gaps-in-therapy-and-patient-care

📰 Subscribe to our monthly newsletter and stay up to date on all educational activities, events, and more! https://eurobloodnet.eu/newsletter/

04/11/2025

🚀​Register now for the 2nd session of the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders begins!

​This accredited European online educational program is designed for healthcare professionals and is organized by ERN-EuroBloodNet, in collaboration with Centre de Référence des Pathologies Plaquettaires and Filière de santé maladies rares MHEMO.🤝​

🎯The main objective of the program is to disseminate up-to-date knowledge among hematologists, pediatricians, internists, clinical pathologists, and other health care professionals involved in the diagnosis and care of patients with IPFDs.

ℹ️​Discover more details of the program and register here: https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/3/session-2-platelet-aggregation-investigating-a-suspected-platelet-function-disorder

31/10/2025

📢​Save the date & register for the upcoming High-Level Meeting (HLM) on a European research and innovation ecosystem for rare diseases!

ERN-EuroBloodNet will proudly take part in the panel discussions, represented by María del Mar Mañú Pereira, our Scientific Coordinator. She will moderate Day 2, focused on EU Infrastructure & Skills: "Building pan-EU infrastructure to strengthen European Reference Networks and enhance capacity, including newborn screening and the use of data, registries and AI to expedite diagnosis and treatment initiation."

📍​December 9-11, 2025, in Brussels.
​🔗​Check the full program and register here: https://www.brains4brain.eu/eu-activities-polices/hlm-rare/check-the-programme-2025/

​🚨​A key objective of the HLM will be to advocate for the EU’s adoption of a European Declaration on Rare Diseases. This formal commitment aims to create a sustainable Research and Innovation Ecosystem for rare diseases, ensuring ongoing dialogue and collaboration among all relevant stakeholders. Additionally, we will push for dedicated funding to be allocated within the next Multiannual Financial Framework (MFF) 2028-2034.

Let’s shape the future of rare disease research together!🌍​

European Commission

30/10/2025

🎧Discover the latest episode of the European Hematology Association (EHA) Unplugged podcast, “Point-of-care Tests for Neonatal Screening of Sickle Cell Disease”, featuring Prof. Gulbis Béatrice, Co-Coordinator of ERN-EuroBloodNet.

In this inspiring conversation, Prof. Gulbis, from the Université libre de Bruxelles (Belgium), shares her extensive experience implementing neonatal screening programs for sickle cell disease ( ) in in low-resource countries in Africa.

✴️​“Newborn screening for sickle cell disease is the first crucial step to get a diagnosis of the disease. The method used for screening should be the most adapted to the local context. It can be a simple, user-friendly point-of-care testing method dedicated to the disease or a more ‘complex’ method dedicated to many rare conditions included into a newborn screening programme.”

🎙️Listen to the full episode here:
https://tr.ee/Udk4BhjGwF

▶️ Watch on YouTube:
https://www.youtube.com/watch?v=OwIekjqdKfw

European Commission

Join us for this inspiring interview with prof Béatrice Gulbis from The Brussels University Hospital in Belgium who discusses her extensive work on implement...

28/10/2025

🎥New video! Building bridges for better transitions in Sickle Cell Disease

How can we ensure that young people living with rare diseases move safely from paediatric to adult care without losing access, confidence, or hope?

🤝​This short film, produced by the Sickle Cell Transitions Policy Lab in collaboration with ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases), brings together patients, clinicians, and policy experts to share why structured transition pathways are essential for equitable and person-centred care.

Through powerful patient stories and expert insights, the video highlights how the Sickle Cell Transition Charter can serve as a blueprint for improving continuity of care — not only in sickle cell disease, but across all rare diseases in Europe.

💬Featuring voices from across the European rare disease community, the film reminds us that transition is not just a change in care setting — it is a crucial step in a young person’s life journey that must be supported, planned, and valued.

🎬Watch now on our YouTube channel: https://youtu.be/POEBC0YEMgM?si=2RdLnTygz6Zqhcjv

Together, we can make transitions safer, fairer, and truly person-centred.

European Commission

Description:This video, produced by the Sickle Cell Transitions Policy Lab in collaboration with ERN-EuroBloodNet, explores how structured and person-centred...

27/10/2025

📣Ciclo di webinar per associazioni di pazienti!

📌 Tema in Primo Piano – Politiche sanitarie europee per i pazienti
Organizzato da ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) & FITHAD, con Loris Brunetta, ePAG Representative.

📅 Seconda sessione: 29/10/2025, ore 17.00 CET
💻 Tema: Regolamento sulle Sostanze di Origine Umana (SoHO)
🗣️Speaker: Gabriella Peluso Cassese
📍 In italiano – gratuito – aperto a tutti.

👉 Scopri il programma completo e registrati qui:

🔗https://eurobloodnet.eu/education-2/patients-organizations-health-professionals-educational-program/topic-on-focus-eu-health-policy-for-patients-organizations/topic-on-focus-eu-health-policy-for-patients-organizations/

Condividi con pazienti, attivisti e operatori interessati!

27/10/2025

📢​Not yet registered? Don't miss the next Thursday webinar in three days!

The are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH).🌟​

🎙️ Speaker: Bertrand Arnulf
📅 Don’t miss it, secure your spot today!
👉 Register here: https://lnkd.in/dFCJVT2R

📰 Subscribe to our monthly newsletter and stay up to date on all educational activities, events, and more! https://lnkd.in/gsHTsEm