EuroBloodNet - European Reference Network on Rare Hematological Diseases

23/01/2026

🚀​Get ready for our next Thursday Webinar session! Join us and don’t miss the opportunity to engage with experts and stay up to date on the latest developments in the field.

🎤 Invited speaker: Gulbis Béatrice
​​🌟​The Thursdays Webinars are an accredited European online educational program provided by the European Board for Accreditation in Hematology (EBAH).

Registrations: https://eurobloodnet.eu/education/thursdays-webinars/67/newborn-screening-for-sickle-cell-disease-what-can-we-learn-from-the-practice-in-the-european-union

21/01/2026

📣​On 20 February 2026, healthcare professionals are invited to a hybrid training session focused on quaternary prevention and ethical clinical practice!

​​🎯​This training will help you discover how to apply the “less is more” principle in pediatric hematology: when to intervene, when to wait, and how each decision impacts the quality of life of patients and their families.

​Find out more👉​ https://eurobloodnet.eu/news/676/sant-joan-de-deu-launches-new-pediatric-hematology-training-on-20-february-2026

20/01/2026

📢Join the ERN-EuroBloodNet team!

We are looking for a Scientific Delivery Coordinator to join the team at Vall d’Hebron Institute of Research (VHIR) - Vall d'Hebron Institut de Recerca and support the scientific coordination of ERN-EuroBloodNet.

You will work alongside the ERN-EuroBloodNet scientific manager in the effective management and delivery of the Registry and other projects associated with Registries, mostly funded by the in the frame of the Horizon Europe Program.

👉 Interested? Apply now! https://jobs.vhir.org/jobs/5909298-scientific-delivery-coordinator-childhood-cancer-and-blood-disorders

19/01/2026

💻​Register now for the next Topic on Focus session!

https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/5/session-4-flow-cytometry-for-ipfd-advantages-and-limits

🚨​Webinar alert! Register now for the next session of the Topic on Focus on Inherited Platelet Function Disorders.

​📆​21st January | 17:00h
​ℹ️Info and registrations: https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/5/session-4-flow-cytometry-for-ipfd-advantages-and-limits

​ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders (IPFD) is an accredited European online educational program targeting health professionals organized by the ERN-EuroBloodNet in partnership with the CRPP (French Reference Center for Inherited Platelet Disorders) and the Filière de santé maladies rares MHEMO (French national Network for Rares haemostatics disorders).

16/01/2026

📢​ survey launched! A new multistakeholder survey from the RealiseD_ihi project invites the rare disease community to share insights and help improve clinical trial enrolment.

This consultation invites health care professionals, academia, industry representatives, regulators, trial sponsors and patient advocates to share their perspective on barriers and opportunities and contribute to shaping a more inclusive and efficient future for rare disease research.​🔬​🌍​

🗓️ Open until 28 January 2026
👉 Find out more:

Clinical trials are essential to advancing new therapies; however, recruiting participants for rare and ultra‑rare conditions remains a significant challenge. The RealiseD project launched a survey that seeks to identify and understand the factors that influence enrolment in rare disease clinica...

15/01/2026

🚨​Webinar alert! Register now for the next session of the Topic on Focus on Inherited Platelet Function Disorders.

​📆​21st January | 17:00h
​ℹ️Info and registrations: https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/5/session-4-flow-cytometry-for-ipfd-advantages-and-limits

​ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders (IPFD) is an accredited European online educational program targeting health professionals organized by the ERN-EuroBloodNet in partnership with the CRPP (French Reference Center for Inherited Platelet Disorders) and the Filière de santé maladies rares MHEMO (French national Network for Rares haemostatics disorders).

05/01/2026

📣​Registrations are open for , taking place on 3–4 June 2026 in Prague and online. Join the rare disease community in discussions shaping future priorities for rare diseases in Europe.

📝​Secure your place with early-bird registration: https://eurobloodnet.eu/news/698/register-now-for-ecrd-2026

31/12/2025

🔔​ Publication! "HELIOS Action: Advancing research, education, and equity in hemoglobinopathies across Europe and beyond"

The article was recently published in HemaSphere Journal, the official open-access journal of the European Hematology Association (EHA). This publication was developed on behalf of the HELIOS ACTION project, one of the collaborative research projects of ERN-EuroBloodNet, aimed at strengthening European cooperation and advancing knowledge in rare hematological disorders.

🔗​Find out more:

We are proud to share that ERN-EuroBloodNet experts have co-authored a new peer-reviewed article in HemaSphere, the official open-access journal of the European Hematology Association (EHA), showcasing cutting-edge research with implications for clinical practice and patient care in hematology. Hem...

30/12/2025

📢​Register now for the first session of the "EHC-ERN-EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder"!

This educational program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation European Haemophilia Consortium (EHC), represented by ePAG advocate Marius Tanase.

The program brings together clinicians, researchers, and patient advocates to encourage shared learning and knowledge exchange across Europe.​​​🌍​

​​​📅​Start date: 22/01/2026
​​​✒️Registration for the full program is open! https://eurobloodnet.eu/education-2/patients/webinars/topic-on-focus-for-patient/topic-on-focus-ageing-well-with-rare-bleeding-disorders/topic-on-focus-ageing-well-with-rare-bleeding-disorders/

30/12/2025

🚀​The last ERN-EuroBloodNet newsletter of 2025 is out now! Discover the latest updates, highlights, and insights from the rare hematological field, including research, clinical initiatives, and network activities across Europe.

🔗Subscribe now to stay informed and connected with the ERN-EuroBloodNet community! https://eurobloodnet.eu/newsletter/

23/12/2025

🌟Happy holiday season & best wishes for 2026!🌟

2025 has been a very active year for ERN-EuroBloodNet, with key achievements in education, clinical care, research, data and health policy across Europe. We’re proud of the collective work of our network. demonstrate the power of cooperation in strengthening health resilience, clinical excellence and access to expertise for rare disease patients in all Member States.

https://eurobloodnet.eu/news/694/happy-holiday-season-best-wishes-for-2026
European Commission European Hematology Association

15/12/2025

⏰Final week to submit your abstract! The submission is still open for the European Hematology Association SWG Scientific Meeting on Bleeding and Platelet Disorders, to be held in Florence, Italy, April 9–11, 2026.

This meeting will highlight the latest advances in congenital and acquired bleeding and platelet disorders, including novel therapies, diagnostics, and evolving standards of care.

​​​🗣️​Chairs: Giancarlo Castaman & Paolo Gresele

📝 Submit your abstract by December 21!

https://eurobloodnet.eu/news/697/eha-swg-scientific-meeting-abstract-submission-is-open-until-december-21-2025