EuroBloodNet - European Reference Network on Rare Hematological Diseases

09/09/2026

📢 Don't miss the upcoming joint ERN-EYE and ERN-EuroBloodNet webinar on Rare Anterior Segment Manifestations of Hematological Disorders!

This joint webinar will bring together expertise from the fields of ophthalmology and hematology to explore rare anterior segment manifestations associated with hematological disorders.

📅Save the date and register now: https://eurobloodnet.eu/education-2/external-events/external-events/1/ern-joint-webinar-ern-eye-eurobloodnet-rare-anterior-segment-manifestations-of-hematological-disorders

08/09/2026

📢 Register for our upcoming webinar on the global prevalence and ethnic diversity of von Willebrand Disease ( )!

Based on new population genetics research, this session will bring fresh insight into how VWD affects communities differently around the world. The ERN-EuroBloodNet is proud to co-organise it with EHC - European Haemophilia Consortium and the European Association for Haemophilia and Allied Disorders (EAHAD).

🗓️ 10 September 2026 ⏰️ 17:00 CEST

🎙️ Speaker: Dr Omid Seidizadeh, BMLS, MSc, PhD, Research Leader at the Angelo Bianchi Bonomi Hemophilia and Thrombosis Center in Milan, Italy

Register now: https://eurobloodnet.eu/education/thursdays-webinars/70/updated-global-prevalence-and-ethnic-diversity-of-von-willebrand-disease-based-on-population-genetics-analysis

07/09/2026

🩸Are you ready for Session 10 of the Inherited Platelet Function Disorders webinar series?

The ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders (IPFD) is an accredited European online educational program for healthcare professionals, organised by ERN-EuroBloodNet in partnership with the CRPP (French Reference Center for Inherited Platelet Disorders) and the Filière de santé maladies rares MHEMO

📚 Join us for the upcoming sessions and expand your knowledge of inherited platelet function disorders.

👉 Register now: https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/11/session-10-glanzmann-thrombasthenia-general-aspects-of-treatment-platelet-transfusion-rfviia-innovative-therapies-hsct

02/09/2026

🧬Register now for Session 6 of the EDITSCD & ERN-EuroBloodNet Focus on Genetic Therapy for People Living with SCD!

Missed the previous sessions? You can watch the recordings on our YouTube channel: https://www.youtube.com/playlist?list=PLpldFGPsMHrl64SoC7feIzIIx6SKFC7UG

📅Register now and join us: 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/6/session-6-future-developments-and-crispr-cas9-for-scd

Don’t miss this opportunity to learn more about the latest developments in genetic therapies for people living with sickle cell disease.

01/09/2026

📊​How can we make better use of rare disease data to accelerate research and innovation?

At the SSIEM 2026 Scientific Symposium, Dr María del Mar Mañú Pereira, Scientific Coordinator of ERN-EuroBloodNet and coordinator of WG6 of HLM4RARE, shared the work and vision of WG6 on data quality and data use in rare diseases.

Drawing on the experience of RADeep Network, she highlighted how an European cross-border infrastructure can generate quality-validated data and RWE for rare hematological research and innovation, and what it takes to move from successful pilots to sustainable infrastructure.

🔹Rare disease data are not a small version of big data. Their complexity and heterogeneity need to be understood and addressed from the start.

🔹Federation is the endpoint, not the starting point. Models need to be developed and validated on well-curated data before being deployed across federated nodes.

🔹We have enough pilots. What is missing is scale. The next step is to consolidate what works and build sustainable data infrastructure that can serve rare disease research in the long term.

🔹Quality is designed in, not recovered afterwards. Data quality needs to be defined from day one, aligned to the EMA Data Quality Framework and the EHDS quality and utility label.

Find out more about RADeep Network: https://www.radeepnetwork.eu/

European Commission European Hematology Association

28/08/2026

🩸Are you ready for Session 10 of the Inherited Platelet Function Disorders webinar series?

The ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders (IPFD) is an accredited European online educational program for healthcare professionals, organised by ERN-EuroBloodNet in partnership with the CRPP (French Reference Center for Inherited Platelet Disorders) and the Filière de santé maladies rares MHEMO

📚 Join us for the upcoming sessions and expand your knowledge of inherited platelet function disorders.

👉 Register now: https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/

26/08/2026

📢​Join us for our upcoming ERN Joint Webinar! ERN-EYE & ERN-EuroBloodNet present: "Rare Anterior Segment Manifestations of Hematological Disorders"

This joint webinar will bring together expertise from the fields of ophthalmology and hematology to explore rare anterior segment manifestations associated with hematological disorders.

📅Save the date and register now!

https://eurobloodnet.eu/education-2/external-events/external-events/1/ern-joint-webinar-ern-eye-eurobloodnet-rare-anterior-segment-manifestations-of-hematological-disorders

European Commission European Hematology Association

24/08/2026

📚Check out our upcoming educational activities! Take a look at the webinars planned for September and October and save the dates!

📅Find all the upcoming sessions and register here: https://eurobloodnet.eu/education/main/

Stay up to date with the latest educational activities across ERN-EuroBloodNet and join us!

European Commission European Hematology Association

17/08/2026

🚨10 September 2026, less than 1 month left to apply!

🔬The ERDERA Clinical Trial Call 2026 is open, supporting multinational research consortia working to advance early-phase clinical trials and bring new therapies closer to people living with rare diseases.

📅Expression of Interest deadline: 10 September 2026

👉 Find out more about the call, eligibility and how to apply: https://eurobloodnet.eu/news/735/erdera-launches-clinical-trial-call-2026-to-advance-early-phase-clinical-trials-for-rare-diseases

European Commission Erdera

The European Rare Diseases Research Alliance (ERDERA) has launched its Clinical Trial Call 2026, supporting multinational early-phase clinical trials that aim to accelerate the development of new therapies for people living with rare diseases.

14/08/2026

🌍​Calling our Portuguese-speaking community!

Join the 1st Portuguese Symposium on Sickle Cell Disease & Thalassaemia:

📅 24 September 2026
📍 Lisbon, Portugal

A day bringing together healthcare professionals, researchers, patients, families and policymakers to share knowledge, best practices and perspectives on hemoglobinopathies.

🎟️ Registration is open, save your spot: https://eurobloodnet.eu/news/739/1o-simposio-portugues-de-doenca-falciforme-e-talassemia

Appdh Hemoglobinopatias European Commission European Hematology Association

The 1º Simpósio Português de Doença Falciforme e Talassemia will take place on 24 September 2026 at the Auditório do Alto dos Moinhos in Lisbon, Portugal. Organised by the Portuguese Association of Parents and Patients with Haemoglobinopathies (APPDH), the symposium will bring together healthca...