ERN EuroBloodNet
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erneurobloodnet.bsky.social
ERN EuroBloodNet
@erneurobloodnet.bsky.social
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases.
Funded by the European Union.
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🩸​June 19th is #WorldSickleCellDay, and
ERN-EuroBloodNet & @radeep.bsky.social are proud to launch a 2-minute animated video co-created with youth living with #SickleCell.

📺 YouTube playlist: bit.ly/40dkz0P

#SickleCellDisease #WSCD25 #TransitionOfCare #PatientVoices #ERN @mmanupe.bsky.social
Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story - YouTube
Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story (Multilingual Versions). This video is available in this playlist with t...
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Reposted by ERN EuroBloodNet
Artificial intelligence is already being applied in rare haematological diseases.

The #SYNTHEMA and @erneurobloodnet.bsky.social training programme, led by experts from the field, covers synthetic data, federated learning, regulation and clinical use cases.

Register: synthema.eu/training/
April 20, 2026 at 10:22 AM
🚀 Ready to explore Artificial Intelligence #AI in hematology? Join the SYNTHEMA & ERN-EuroBloodNet Educational Program and be part of this cutting-edge learning experience!

📅Starting May 8th | Every Friday in May

eurobloodnet.eu/education-2/...

#ERNs #ERNeu #hematology
April 16, 2026 at 11:07 AM
Reposted by ERN EuroBloodNet
How will synthetic data be applied in real research?

This final session will present use cases in Sickle Cell Disease and Acute Myeloid Leukaemia as part of the joint #SYNTHEMA and @erneurobloodnet.bsky.social training programme.

👉 Register: synthema.eu/training/
April 14, 2026 at 8:21 AM
🚨​Last chance to register for the upcoming session of the Focus on Genetic Therapy for people living with #SCD!

Tomorrow at 17:00, don’t miss the fourth session: "Genome Editing: CRISPR/Cas9 Advanced Tools and SCD – Using New Methods."

eurobloodnet.eu/education-2/...
April 14, 2026 at 8:52 AM
👉 Group Discussions at #ECRD 2026! All those planning to attend ECRD 2026 in-person are invited to submit proposals for small-group discussion topics.

🗓️ Deadline: 17 April 2026
🔗 www.rare-diseases.eu/groupdiscuss...

#ERNs #ERNeu #ECRD #RareDiseases #ShareCareCure
April 10, 2026 at 8:43 AM
📢 Fresh news! The ERN-EuroBloodNet monthly newsletter is out now!

Stay up to date with the latest news and updates on rare haematological diseases and don’t miss any upcoming events and opportunities.

👉 Subscribe now: eurobloodnet.eu/newsletter/

#ERNs #ERNeu #ShareCareCure #hematology
April 9, 2026 at 10:17 AM
🚨​Only two weeks left until the 4th webinar session of the EDITSCD & ERN-EuroBloodNet program on Genetic Therapy for People Living with Sickle Cell Disease!

Register now! eurobloodnet.eu/education-2/...

🎞️​Missed the previous sessions? www.youtube.com/playlist?lis...
March 31, 2026 at 9:25 AM
Reposted by ERN EuroBloodNet
If you're interested in regulation and ethics in AI for healthcare, don’t miss this session on MDR, the EU AI Act and privacy-preserving federated learning as part of the joint #SYNTHEMA and @erneurobloodnet.bsky.social training programme.

👉 Register: synthema.eu/training/
March 31, 2026 at 9:08 AM
Reposted by ERN EuroBloodNet
Join the first #SYNTHEMA webinar in our training series!
8 May 2026 | 12:30 CEST

Explore the @erneurobloodnet.bsky.social infrastructure for synthetic data: governance, strategy & architecture.

Open to patients & health professionals.

👉 synthema.eu/training/

Don’t miss it & share!
March 24, 2026 at 12:46 PM
🚀​Are you ready to explore the cutting-edge world of Artificial Intelligence in hematology?

ERN-EuroBloodNet and @synthemaeu.bsky.social are proud to launch a joint educational program on #AI, designed for both the public-at-large and expert audiences.

eurobloodnet.eu/education-2/...
March 23, 2026 at 10:44 AM
Reposted by ERN EuroBloodNet
Registration is open for the SYNTHEMA & @erneurobloodnet.bsky.social in haematology webinar series.

Join all 4 sessions in May 2026 or register for individual webinars.

Synthetic data, federated learning, regulation and clinical use cases in AML and SCD.

Register: synthema.eu/training/
March 18, 2026 at 10:05 AM
📣​Register now for the fourth webinar of the program “EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with Sickle Cell Disease.”

Join us eurobloodnet.eu/education-2/...

Missed the previous sessions? Watch them all on our YouTube channel:
www.youtube.com/playlist?lis...
March 23, 2026 at 10:22 AM
🗣️​Patients’ rights in cross-border healthcare and the European Reference Networks #ERNs

María del Mar Mañú Pereira, Scientific Coordinator of ERN-EuroBloodNet, will contribute to Session 3 of the program in her role as Vice-Chair of the TRIO of the 24 ERNs.

eurobloodnet.eu/news/716/hig...
March 17, 2026 at 10:26 AM
🚀​Register now for the Session 6 of the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders!

​This accredited educational program is designed for healthcare professionals.

Register now and don't miss it! eurobloodnet.eu/education/to...

#ERNs #ERNeu #hematology
March 17, 2026 at 9:03 AM
📢​Not registered yet? Don’t miss today’s session of our Thursday Webinar Series!

Join us for a session on von Willebrand factor and von Willebrand disease in ageing: mechanisms, evolving phenotypes and clinical implications.

👉​Register now! eurobloodnet.eu/education/th...

#ERNs #ERNeu #VWD
March 12, 2026 at 9:41 AM
📢​Register now for the second session of the "EHC-ERN-EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder"!

It brings together clinicians, researchers & patient advocates to encourage shared learning and knowledge exchange across Europe.​​​
​
​​​https://bit.ly/3PbLAPq
March 2, 2026 at 8:56 AM
Reposted by ERN EuroBloodNet
Scientific progress depends on who gets to take part. In #SYNTHEMA, women contribute as researchers, clinicians and data specialists across all stages of the work. This day draws attention to how scientific careers are accessed: synthema.eu/2025/02/11/b...
February 11, 2026 at 9:15 AM
​Register now for the 5th session of the "ERN-EuroBloodNet Topic in Focus: Inherited Platelet Function Disorders"!

🔗​More info & registrations: eurobloodnet.eu/education/to...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure
February 10, 2026 at 10:09 AM
ERN-EuroBloodNet team was present at the RealiseD General Assembly Meeting 2026!🤝

Dr María del Mar Mañú Pereira, ERN-EuroBloodNet Scientific Coordinator, contributes to one of the use cases focused on MDS/MPN, in collaboration with Humanitas University.

🔗​ eurobloodnet.eu/research/rea...
February 3, 2026 at 9:54 AM
🚨​Not registered yet? Tomorrow is the 4th session of the "ERN-EuroBloodNet Topic in Focus: Inherited Platelet Function Disorders". Don’t miss it!

🎯​An accredited European online educational program targeting health professionals.

🔗​Register now: eurobloodnet.eu/education/to...
February 3, 2026 at 9:52 AM
Reposted by ERN EuroBloodNet
📢 On European #VonWillebrandDisease Awareness Day 2026, we amplify the voices of patients across Europe sharing their experiences & challenges.❤️ Thank you to everyone who made the invisible visible! #VWDay #beVWDaware #VWDunited #VWDtogethere
February 1, 2026 at 9:22 AM
🔔 Don’t miss tomorrow’s ERN-EuroBloodNet Thursdays Webinar!

Join us for an insightful session on Newborn Screening for Sickle Cell Disease #SCD with prof Gulbis Béatrice.

👉 Register now and secure your spot: eurobloodnet.eu/education/th...

#ERNs #ERNeu #hematology #SCD #SickleCellDisease #EU
January 28, 2026 at 11:35 AM
Reposted by ERN EuroBloodNet
🚨 Registrations are OPEN for #ECRD2026
2026 marks a defining moment for rare disease policy in Europe. Five years after #Rare2030 and midway to the WHO 2028 target, #ECRD gathers the community to support the co-development of an EU Action Plan.
👉 Register now: https://www.rare-diseases.eu/register/
December 12, 2025 at 4:50 PM
Reposted by ERN EuroBloodNet
Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar:

🛠️ Medical Device Shortages & Regulatory Constraints
🗓️ Wed 21 Jan @ 18:00 CET
🎙️ With clinicians, regulators & industry experts
🔗 Register: events.zoom.us/ev/AvVY1AZbs...

#EUfunded #HealthUnion #RareDisease #ERNs
January 12, 2026 at 9:14 AM
📋​#New 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).

eurobloodnet.eu/news/699/new...
New Publication:
eurobloodnet.eu
January 5, 2026 at 9:16 AM