ERN EuroBloodNet

🩸​June 19th is #WorldSickleCellDay, and @ERNEuroBloodNet & @RADeep_network are proud to launch a 2-minute animated video co-created with youth living with #SickleCell. 📺 YouTube playlist: youtube.com/playlist?list=… #SickleCellDisease #TransitionOfCare @mmanupe @MariangelaPell4

🧬New Webinar Series | Genetic Therapy & Sickle Cell Disease! We’re excited to announce the launch of EDITSCD & ERN-EuroBloodNet: Focus on Genetic Therapy for People Living with SCD. 📅 Starts 26 September 2025 🔗 Register here eurobloodnet.eu/education-2/pa… #ERNeu #ERNs #HealthUnion

▶️ Now available! EHA & ERN-EuroBloodNet Spotlight Congenital Bone Marrow Failure Syndromes. The recordings from our recent webinar series on Congenital Bone Marrow Failure Syndromes (BMF) are now accessible to everyone. These webinars offers valuable insights into the…

📣 Do you know about #ERDERA's Networking Support Scheme? 👇 It funds events that boost rare disease & rare cancer knowledge exchange. 👩‍⚕️ For researchers, clinicians, advocates & more. 📅 Apply by 7 Oct 2025 🔗 loom.ly/CwIvcvM #ResearchFunding #RareDiseases #RareCancers

🌍​Today is #Castleman Disease Day! ​🔎Did you know? The ERN-EuroBloodNet website has a section called "Disease cards", a curated repository of our actions, resources and materials organized by disease group. Explore the Castleman Disease section: bit.ly/4lCoNI5 #ERN

🌍 Hoy, en el Día Mundial de la Enfermedad de Castleman, nos unimos a las personas que conviven con esta enfermedad poco frecuente para dar visibilidad, impulsar la investigación y reforzar el apoyo al movimiento asociativo. 👉enfermedades-raras.org/movimiento-aso…

Register by August 4 to save on your fee for the 20th Annual Sickle Cell & Thalassaemia Conference. Theme: Haemoglobinopathies in Focus: Global Advances, Local Disparities 1–4 October 2025 | London | CPD & CME accredited ascatconferences.com/registration/

▶️ Now available! EHA & ERN-EuroBloodNet Spotlight Congenital Bone Marrow Failure Syndromes. The recordings from our recent webinar series on Congenital Bone Marrow Failure Syndromes (BMF) are now accessible to everyone. These webinars offer valuable insights into the diagnosis,…

#VonWillebrandDisease can be the cause of unexplained abnormal uterine bleeding with severe chronic anaemia and iron deficiency. It’s time for health systems to recognise #VonWillebrandFactor as a #CriticalMedicine. @EMA_News

Interested in synthetic data, rare diseases, or AI-powered breakthroughs in hematology? Visit #SYNTHEMA’s publications section to explore work on data privacy, federated learning, AI in rare blood diseases, clinical decision-making for HSCT, and more. 👉 Start reading:…

🎯Nuovo ciclo di webinar per associazioni di pazienti! 📌 Tema in Primo Piano – Politiche sanitarie europee per i pazienti 📅 Prima sessione: martedi 22 luglio, ore 17.00 CEST 📍 In italiano – gratuito – aperto a tutti. 🔗 lnkd.in/dT226mFC #ERNeu #ERNs #HealthUnion

🎞️​Now available on Youtube! Catch up on the @EHA_Hematology & ERN-EuroBloodNet Spotlight on Congenital Bone Marrow Failure (BMF) Syndromes webinar series! 💻​Missed the live sessions? Watch them anytime on YouTube! youtube.com/playlist?list=… #ERNeu #ERNs #HealthUnion #EU4Health

Start browsing this year's EHA Perspectives Congress Reports! Capturing the most important scientific developments and clinical insights presented during #EHA2025 in Milan, we are proud to bring you the latest on AI, hemoglobinopathies, and precision medicine in two reports:…

🎯Find out how the #ERNs are making a real impact in the lives of people living with rare diseases and their families! 💻The @EU_Commission published new factsheets, explaining how the EU is delivering on rare diseases: ​health.ec.europa.eu/rare-diseases-… #ERNeu #HealthUnion #EU4Health

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

📢​#NEW! ERN-EuroBloodNet Topic on Focus: EU Health Policy for Patient Organizations! ℹ️This program will be provided in Italian but replicated in English for a wider European audience. 🔗eurobloodnet.eu/education-2/pa… #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure

🚀​ERN-EuroBloodNet monthly Newsletter – June edition is out now! 👉 Read and subscribe here: eurobloodnet.eu/newsletter/ Be part of the community driving hashtag#innovation and collaboration in rare hashtag#hematology across Europe! #ERNeu #ERNs #HealthUnion @EU_Commission

🚀​Last days to register for the upcoming ERN-EuroBloodNet #ThursdayWebinar! Join us for a session on "Gene therapy for hemoglobinopathies, the viewpoint of a specialist in pediatric hemoglobin disorders" Register now! eurobloodnet.eu/education/thur… #ERNs #ERNeu #HealthUnion

📢Final days to register for the upcoming ERN-EuroBloodNet #ThursdayWebinar! Join us for a session on: "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II" 🗓️ Date: 3rd July - 17:00 CEST 💻 Register here: eurobloodnet.eu/education/thur… #ERNeu

📢​Curious about the future of gene therapy in hemoglobinopathies? Join Prof. Mariane de Montalembert in the next ERN-EuroBloodNet #ThursdayWebinar: 🗓️"Gene therapy for hemoglobinopathies: a pediatric specialist’s view" 🔗 Register: eurobloodnet.eu/education/thur… #ERNs #ERNeu

🌟During the #EHA2025 @EHA_Hematology, ERN-EuroBloodNet held a highly productive meeting with European Patient Advocacy Groups (ePAGs). The session was chaired by @MariangelaPell4 , ERN-EuroBloodNet Educational & Patients Program Manager. 👉eurobloodnet.eu/patientsadvoca… #ERNeu #ERNs