​🚀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?...