The 100-day countdown to #RareDiseaseDay begins! Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease. Full video 🎥 youtu.be/7J1oTfoIOGw Let’s bring about equity in more ways than even we can imagine! #ShareYourColours

📢 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.” 👉Register now! eurobloodnet.eu/education-2/...

The European Reference Networks (#ERNs) connect experts across Europe so people living with #RareDiseases can access the care they need. 24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems. Learn more jardin-ern.eu/european-ref... #EU4Health #HealthUnion

The wait is over! Abstracts selected for #ASH25 are now live: https://ow.ly/h53J50XlPNr Congrats to all presenters! Don't miss these presentations in person or virtually — register now! #HemeSky #MedSky

Two productive days in San Sebastian for the #SYNTHEMA consortium have come to an end. Lively discussions, clear goals for the final year: a recap publication on synthetic data in haematology, joint training with @erneurobloodnet.bsky.social, new papers, and the SYNTHEMA platform launch synthema.eu

🚨 Register now for the upcoming ERN-EuroBloodNet Thursdays Webinars! The #ThursdaysWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology​ 👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...

🎧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. 🎙️Listen to the full episode here: www.youtube.com/watch?v=OwIe...

SYNTHEMA builds on strong ethical and collaborative foundations: 🩺 @erneurobloodnet.bsky.social – Europe’s rare haematology network 📊Contributions to ENROL, EU RD Platform, and @radeep.bsky.social 🤝Partnership with Flower - open-source federated learning for privacy-preserving AI

🎥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? 🎬Watch now: youtu.be/POEBC0YEMgM?... #ERNs #ERNeu

📢​Not yet registered? Don't miss the next Thursday webinar in three days! The #ThursdayWebinars are an accredited European online educational program, certified by the European Board for Accreditation in Hematology (EBAH). 👉 Register here: lnkd.in/dFCJVT2R #ERNeu #ERNs #hematology

Presenting the Charter for Optimal Transitions in #SCD at the European Parliament​🌍​ A collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between pediatric and adult services. 🔗​https://bit.ly/4qk0npD

🌍Members, Affiliated Partners & Patient Organisations: Get ready for the 7th ERN-EuroBloodNet Progress Meeting! 🗓 Thursday, 6th November | 💻 Online Take a look at the provisional agenda and register here: eurobloodnet.eu/news/678/ern... #ERNeu #ERNs #HealthUnion #EU4Health

📣​#Hiring alert at @vhir.bsky.social ! Your role: ✅​Ensure smooth communication across teams and stakeholders; ✅​Oversee documentation and data management; ✅​Act as a bridge between the RADeep coordinating team, data providers, and external collaborators. 🔗 jobs.vhir.org/jobs/6487424...

✅ Day 1 | ERN-EuroBloodNet & @radeep.bsky.social – #SCD Patients Session at #ASCAT2025 ! Sexual Health Program for Patients with Sickle Cell Disease 🔹Today’s focus: Understanding the impact of Sickle Cell Disease on Sexual Health #ERNs #hematology #RADeep #ERNeu #ASCAT2025

​🚀EURORDIS has recently launched a new global survey exploring what helps people live with a rare or undiagnosed condition, as well as their families. Make your voice heard and take the survey before 16 November! 🔗https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm

📢Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe! 👉 bit.ly/46JYtGW #ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social

🚀​Registration now open for the Full Program! Just 2 weeks to go before the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders begins! 🎯This accredited European online educational program is designed for healthcare professionals. eurobloodnet.eu/education/to...

💻​Don't miss this opportunity! ERDERA will mark its 1st anniversary with a stimulating free online event open to the entire rare disease community. Register here: events.teams.microsoft.com/event/8a710c...

📣​Have you registered yet? Join us on 𝗠𝗼𝗻𝗱𝗮𝘆 𝘁𝗵𝗲 𝟭𝟱𝘁𝗵 𝗮𝘁 𝟱:𝟬𝟬 𝗣𝗠 for the ERN-EuroBloodNet Patients Webinar: Gene Therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II. 📝​Register now! bit.ly/3IdP6G0 #ERNeu #ERNs #hematology #HealthUnion @ec.europa.eu

🌍​The World Orphan Drug Congress Europe is the largest global event for orphan drugs and rare diseases, attracting over 2,000 attendees, 250+ industry leaders, and 130+ exhibitors, discussing topics from the entire orphan drug lifecycle. ​📝​ secure.terrapinn.com/V5/step1.asp... #WODC #RareDiseases

🎯​​Outcomes of the successful working days at the #EHA2025 Congress!​​ ERN-EuroBloodNet participated actively with: 📍A dedicated booth; 🎤Active participation in oral & poster sessions; 🤝The Board of Network (BoN) meeting. eurobloodnet.eu/news/660/out... @ec.europa.eu @euonehealth.bsky.social

Sickle Cell Disease is rare in the EU (fewer than 5 in 10,000 people), but its prevalence is rising across Europe due to migration and shifting demographics. #SYNTHEMA uses privacy-preserving AI and synthetic data to advance diagnosis, research & treatment. 👉 synthema.eu

Last month, #SYNTHEMA and #GenoMed4All joined #EHA2025 in Milan to present our work on AI-powered federated platforms for data anonymisation & synthetic data. We also shared new insights on hydroxyurea treatment in SCD. Read the recap: synthema.eu/2025/06/17/s... #AIforHealth

🚨​Hiring alert! We are looking for an experienced, motivated and committed Scientific delivery coordinator to join our dynamic team at Vall d’Hebron Institute of Research, Barcelona! ​​✒️Apply now: jobs.vhir.org/jobs/5909298... #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure

🗨️​How can rare disease research better involve patients? #ERDERA has launched a new online survey to explore how rare disease patient organisations can contribute to publicly funded research. 📆Open until mid-July 🔐Confidential ​🔗​Take the survey: shorturl.at/c03db #RareDisease

🌟During the #EHA2025 , ERN-EuroBloodNet held a highly productive meeting with European Patient Advocacy Groups (ePAGs). 👉https://eurobloodnet.eu/patientsadvocacy/epag/ @eurordis.bsky.social @ehc-news.bsky.social @pnhsupport.bsky.social @pnhglobalalliance.bsky.social @ulbruxelles.bsky.social

💻​Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”! 🗓️3rd July - 17:00h CEST. 👉Registrations: eurobloodnet.eu/education/th... #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology

🌍​🩸On #WorldSickleCellDay, ERN-EuroBloodNet is proud to highlight a major step forward in addressing one of the most vulnerable moments in the lives of young people living with #SCD: the transition from pediatric to adult care. 🔗 www.mhpgroup.com/wp-content/u... #SickleCellDisease #SickleCell

At #EHA2025, Sigrid van der Veen (UMC Utrecht) presented a #SYNTHEMA-linked poster on hydroxyurea therapy in SCD. Key findings on metabolites & personalised treatment 👉 library.ehaweb.org/eha/2025/eha... #SickleCell #Genomed4All

🩸​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

📢 Mariangela Pellegrini joined the launch of the Charter for optimal transitions from pediatric to adult care in sickle cell disease, held alongside #EHA2025. 🎯This milestone event, the #SCD Transitions Policy Lab, brought together patient advocates, patients, and clinicians from across Europe

🔬 @mmanupe.bsky.social took the stage at the #EHA2025 Hematology-in-Focus Session with a compelling presentation on: 💻​“Emergence of rare anemias using extensive sequencing techniques” #ERNs #ERNeu #RareDiseases #CrossBorderHealth #HealthUnion

📍Recap from #EHA2025 ! Great to see Mariangela Pellegrini, actively participating in the poster session. 📝She presented important work on: “Establishing consensus on the key components of optimal transition from paediatric to adult care in sickle cell disease across Europe.” #ERNs #HealthUnion

📍 On site at #EHA2025? Come visit us at Hall 4, Allianz MiCo - Milano Convention Centre ! Meet the team and explore how we're advancing care in rare hematological diseases and the latest outcomes of: 🔹 The RADeep Network registries 🔹 The SYNTHEMA project 🔹 The GenoMed4All project

🌟This morning at the #EHA2025 Patient Joint Symposium, Angelo Loris Brunetta, representing the Thalassaemia International Federation as an ePAG member of ERN-EuroBloodNet, chaired the panel and introduced the topic "Advancing Quality of Life as a Measurable Outcome in Clinical Trials." #hematology

📢 #EHA2025 We’re Here! The biggest #hematology event in Europe is kicking off today in Milan, Italy and ERN-EuroBloodNet is proud to be actively participating! 📍On-site in Milan? Visit us at our booth at the Collaboration Plaza, Allianz MiCo - Milano Convention Centre. #ERNeu #ERNs

We’re at #EHA2025! Visit us in Hall 4 and meet the #SYNTHEMA & #GenoMed4All teams. 📢 Don’t miss the Clinical and Data-Driven Research session by @erneurobloodnet.bsky.social tomorrow, 13:00–14:30, with our project experts! 👉 Agenda: lnkd.in/ejt_znV5

#SYNTHEMA collaborates with #RADeep, the EU-wide platform gathering data on rare anaemia disorders. With 200+ healthcare providers in 13+ countries, RADeep—under the @erneurobloodnet.bsky.social umbrella—bolsters our efforts to improve research and care. 👉Learn more about SYNTHEMA: synthema.eu

How can AI help protect privacy and advance rare disease research? Join #SYNTHEMA & #GenoMed4All at #EHA2025 for the Clinical & Data-Driven Research session by @erneurobloodnet.bsky.social. 🗓️ June 13 | 13:00–14:30 📍 Milan 👉 synthema.eu #AIinHematolog

#SYNTHEMA & GENOMED4ALL will be at #EHA2025 in Milan! Join us on June 13 for the Clinical & Data-Driven Research session by @erneurobloodnet.bsky.social, where partners will share insights on AI, data anonymisation & synthetic data for rare blood diseases. 👉Agenda: bit.ly/4dEGoMm

🌍 Last week, the ERN-EuroBloodNet participated in two key events shaping the future of rare and complex disease care across Europe. ✅ These meetings were crucial opportunities to share best practices, align on strategic goals, and reinforce collaboration among the European Reference Networks #ERNs

📣 #ERDERA is happy to announce a new facilitation period for the MOOC: “Diagnosing Rare Diseases: From the Clinic to Research and Back”! 📅 From 12 May – 4 July, get expert support, ask questions & boost your knowledge in #RareDiseases 🔗 More at loom.ly/88Of0Ps

📣 Calling for experts from Underrepresented Countries! 🌍 #ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more. Interested? 👉 loom.ly/YUHruUQ

At #SYNTHEMA we use AI to fill data gaps & improve care for rare blood disorders. Focusing on Sickle Cell Disease & Acute Myeloid Leukaemia, we integrate clinical, genetic & imaging data for improved patient outcomes. 👉 synthema.eu #RareDiseases #Haematology

💻​Not yet registered for this week's session? Register now and join us for the #ThursdayWebinar session on "Indication of splenectomy”! 👩‍🏫Provided by Maria Domenica Cappellini 👉Registrations: eurobloodnet.eu/education/th... #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology

🩸​ERN-EuroBloodNet is a collaborative network aiming to improve the healthcare services of complex or rare hematological diseases & conditions that require highly specialized treatment in Europe. 🔔​Follow us & stay up to date on rare haematological diseases! youtu.be/QMc5YdA6-44?...