EuroBloodNet - European Reference Network on Rare Hematological Diseases

19/06/2026

🌍​19th June is World Sickle Cell Disease Day!

To mark this important day, ERN-EuroBloodNet, in collaboration with the RADeep Network, has developed a new infographic on “Sickle Cell Disease & Sexual Health”, transforming patient experiences into awareness and education.

This resource was shaped by patient voices and lived experiences gathered during Patient sessions at Academy For Sickle Cell & Thalassaemia ASCAT 2025, which focused on this important and often overlooked topic.

Sexual health is a fundamental part of overall wellbeing. Yet many people living with SCD face challenges in this area that often remain unspoken.

​📢​Our message for this day is clear:
Sexual health is part of SCD. Let’s start the conversation!

At ERN-EuroBloodNet, patient engagement continues to drive the development of awareness and educational resources. Each Patient Session serves as a starting point for new initiatives inspired by real patient experiences and needs.

🎞️​Following a previous ASCAT edition, we also developed a series of videos on transition in SCD, based on patient testimonies shared during the session. If you haven't explored them yet, you can still watch the series here: https://www.youtube.com/watch?v=q0GQX6029BQ&list=PLpldFGPsMHrkxflcq9hlLodrGLuT3_itK

🔗​https://eurobloodnet.eu/news/733/world-sickle-cell-disease-day-2026-turning-patient-voices-into-awareness-and-education

18/06/2026

📢​Register now for the "Session 9: Glanzmann thrombasthenia – general aspects of diagnosis and follow-up" of the ERN-EuroBloodNet Topic on Focus: Inherited Platelet Function Disorders!

​This 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).🤝​

https://eurobloodnet.eu/education/topic-on-focus-webinars/inherited-platelet-function-disorders/10/session-9-glanzmann-thrombasthenia-general-aspects-of-diagnosis-and-follow-up

16/06/2026

🚨Last chance to register for today's webinar!

🧬Session 5: Safety of CRISPR-Cas9
Part of the EDITSCD & ERN-EuroBloodNet Focus on Genetic Therapy for People Living with SCD series.

Don't miss this opportunity to hear from experts and learn about the latest advances in genetic therapies for sickle cell disease.

🔗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/5/session-5-safety-of-crispr-cas9

11/06/2026

🚀 has officially kicked off!

Come and visit the ERN-EuroBloodNet team and discover the latest developments and initiatives in rare hematological diseases at the European level.

You can also find out more about RADeep Network and our activities in RealiseD_ihi and SYNTHEMA projects.

Our coordination team will be happy to meet you to exchange ideas, discuss ongoing activities, and explore opportunities for collaboration.

📍See you at the Collaboration Plaza!

08/06/2026

🧬Last days to register for Session 5 of the EDITSCD & ERN-EuroBloodNet webinar series: Focus on Genetic Therapy for People Living with SCD!

This educational program is developed in partnership with the project, led by Annarita Miccio (Institut Imagine of Genetic Diseases), and benefits from the contributions of members of the EDITSCD steering committee and patient representatives: Miriam Santos Freire (APPDH), Dianaba BA and David-Zacharie Issom (Association Suisse Drépano), the three of them are part of the European Sickle Cell Federation (ESCF).

Speakers: Ayal Hendel & Toni Cathomen.

🔗 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/5/session-5-safety-of-crispr-cas9

▶️ Missed the previous sessions? Watch them here:
https://www.youtube.com/watch?v=29rIjINBc9s&list=PLpldFGPsMHrl64SoC7feIzIIx6SKFC7UG

05/06/2026

📢 Call for participants, applications close on 15 June!

Are you interested in expanding your knowledge on Acquired and Inherited Aplastic Anemia and exchanging expertise with specialists from across Europe?

Join this educational opportunity for healthcare professionals and connect with leading experts in the field.

🔗 Register now and secure your place: https://eurobloodnet.eu/education/acquired-and-inherited-aplastic-anemia-in-pediatric-and-adult/

ℹ️Participants must be affiliated to European Member States Healthcare providers.

02/06/2026

📢As part of the Sickle Cell Transitions Policy Lab, ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) & European Sickle Cell Federation (ESCF) are delighted to share that our poster will be presented at in Prague, one of Europe's leading rare disease conferences.

The poster highlights the process of establishing the Sickle Cell Transitions Policy Lab, a participatory model bringing together patients, patient advocates, healthcare professionals and policymakers from 11 European countries.

🤝Through this collaboration, we have co-developed and launched a framework to support an optimal transition from pediatric to adult care for young people living with .

📍Meet the team:
• Poster Q&A session: Wednesday 3 June, 3:30-4:30 pm CET
• Poster pitch session: Thursday 4 June, 11:00 am CET

💬 If you are attending ECRD and are interested in learning more, we would be delighted to see you at these sessions.

🔗https://www.mhpgroup.com/the-charter-for-optimal-care-transitions-from-paediatric-to-adult-care-in-sickle-cell-disease/

29/05/2026

🩸Only 2 weeks to go until the ERN-EuroBloodNet Board of the Network Meeting at !

Join us in Stockholm for a full morning dedicated to the future of rare hematological diseases and reflect on the next strategic steps for the Network: early diagnosis, education and capacity building, research and innovation, patient empowerment, real-world evidence generation, and equitable access to expertise and care across Europe.

📅 12 June 2026 at 9:00h
📍 EHA Congress – Stockholm
👥 ERN-EuroBloodNet Members, Affiliated Partners & ePAGs.

Register now and don’t miss the opportunity to connect with the network and shape future actions together!

https://eurobloodnet.eu/meetings/board-of-network-meetings/3/12th-june-2026-board-of-network-meeting

29/05/2026

🩸How can Europe shape the future of rare hematological diseases within the new EU policy landscape?

At the ERN-EuroBloodNet Board of the Network Meeting at , Prof. Matteo Della Porta (IRCCS Clinical Institute Humanitas di Rozzano, Italy, ERN-EuroBloodNet Research & Registries coordinator) will share his vision on the future opportunities emerging from the new Multiannual Financial Framework (MFF), Europe’s Cancer Plan, and the evolving European Rare Cancer agenda.

🎧 In his recent European Hematology Association podcast interview, Prof. Della Porta already highlighted the urgent need for stronger European collaboration, data integration, and long-term strategic investment in rare haematological malignancies , a conversation that will continue at : https://open.spotify.com/episode/7CNarV5MKXxUQGNcU9ffim?si=4f2b2649057a4f9b&nd=1&dlsi=d747957e3eb147d2

Registrations for the ERN-EuroBloodNet BoN meeting:
https://eurobloodnet.eu/meetings/board-of-network-meetings/3/12th-june-2026-board-of-network-meeting

We are pleased to invite you to the ERN-EuroBloodNet Board of Network meeting, taking place during the EHA Annual Congress 2026 on Friday 12 June 2026, from 9:00 to 12:45 (CEST) in Stockholm, Sweden.    The Agenda will be confirmed soon!   The EHA Annual Congress is one of the most important pla...

28/05/2026

🧬Join Session 5 of the EDITSCD & ERN-EuroBloodNet webinar series: Focus on Genetic Therapy for People Living with SCD!

This educational program is developed in partnership with the project, led by Annarita Miccio (Institut Imagine of Genetic Diseases), and benefits from the contributions of members of the EDITSCD steering committee and patient representatives: Miriam Santos Freire (APPDH), Dianaba BA and David-Zacharie Issom (Association Suisse Drépano), the three of them are part of 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/5/session-5-safety-of-crispr-cas9

▶️ Missed the previous sessions? Watch them here:
https://www.youtube.com/watch?v=29rIjINBc9s&list=PLpldFGPsMHrl64SoC7feIzIIx6SKFC7UG