🔔 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

🚨 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/

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

📋​#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...

📣​Registrations are open for #ECRD2026, taking place on 3–4 June 2026 in Prague and online. Join the rare disease community in discussions shaping future priorities for rare diseases in Europe. 📝​Secure your place with early-bird registration: eurobloodnet.eu/news/698/reg... #ERNs #ERNeu

📢​Register now for the first session of the "EHC-ERN-EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder"! The program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation @EHC_Haemophilia ​ ​📝​Registrations: bit.ly/4phwowL

🌟​Happy holiday season & best wishes for 2026! 2025 has been a very active year for ERN-EuroBloodNet, with key achievements in education, clinical care, research, data and health policy across Europe. We’re proud of the collective work of our network. eurobloodnet.eu/news/694/hap...

El trabajo, liderado por investigadores @sescs.bsky.social , sintetizó la evidencia científica disponible sobre los factores pronósticos en este tipo de linfoma con el objetivo de informar una guía de práctica clínica sobre el linfoma de #Burkitt impulsada por la red @erneurobloodnet.bsky.social.

🚀​New educational program for patients and their families! ERN-EuroBloodNet, in collaboration with the @EHC_Haemophilia , is launching a new #webinar series dedicated to patients with bleeding disorders and their families. ​​Register now for the full program! eurobloodnet.eu/education-2/...

🚀​Register now for the 3rd session of the ERN-EuroBloodNet Topic on Focus on Inherited Platelet Function Disorders! ​​​🗣️​Speaker: Paolo Gresele ​​🕓​ 17/12/2025 at 17:00 ℹ️​More details and registrations: eurobloodnet.eu/education/to... #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure

📅❄️ Day 7 of #JARDIN's Advent Calendar ✨@erneurobloodnet.bsky.social improves care for rare and complex hematological diseases across Europe. It covers 450+ rare hematological disorders, uniting 90 members across 18 Member States, 7 affiliated partners in 6 MS and 11 ePAGs. 🔗https://eurobloodnet.eu

📤​Are you ready for the last webinars of 2025? The EDU Blood Academy Newsletter is out now! Discover the webinars scheduled for December and stay up to date with the latest news. Subscribe to our Newsletter here: eurobloodnet.eu/edu-blood-ac... #ERNeu #ERNs #HealthUnion

📢​Register now for the next edition of the ERN-EuroBloodNet Thursdays Webinar! The #ThursdaysWebinars series is an accredited European online educational program, certified by EBAH.​ 🎙️Speaker: Olivier Hermine 👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...

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