🌍 Save the date for #ECRD2026, a leading patient-led policy event on rare diseases | 3–4 June | Prague & online This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases” 🔗 Info: https://loom.ly/kNumRPA

📣​The #RADeep team is at #ASH25 in Orlando! We’re excited to be part of the 67th ASH Annual Meeting, taking place from December 6-9, 2025, at the Orange County Convention Center in Orlando, Florida. ​​🩸 Find out more: hematology.org/meetings/ann... #RADeep #Hematology #Research

📍​Dr. María del Mar Mañú Pereira (RADeep Coordinator and Scientific Coordinator of the ERN-EuroBloodNet & #ENROL) presented “Towards ethical AI in Rare Diseases: data quality and clinical validation for real equity” at the XXXI National Congress on Health Law in Madrid, Spain. #CongresoAEDS

📣We are pleased to announce that #RADeep will participate in the 67th #ASH25 Annual Meeting and Exposition! ✅This year, we will present four key contributions focused on real-world data, outcome research in hemoglobinopathies, and Europe-wide data standardization efforts.

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

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

Through collaborations with @radeep.bsky.social and ENROL, SYNTHEMA aligns rare disease datasets with European standards. This ensures interoperability across registries and hospitals, strengthening the foundation for synthetic data and AI solutions in real-world healthcare.

✅ 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

📣​#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...

✅A successful and inspiring RADeep DAC Annual Meeting! 🌍​Last week, representatives from Italy, France, Spain, the Netherlands, Greece, Cyprus, Belgium, and Portugal gathered at @vallhebron.com for the annual #RADeep Data Access Committee (DAC) meeting. www.radeepnetwork.eu @ec.europa.eu

📢Exciting news! The RADeep Data Access Committee (DAC) is meeting next Thursday, the 18th, at @vhir.bsky.social We'll come together to collaborate, share updates, and define the next steps for the future of RADeep🤝 🌐https://www.radeepnetwork.eu/ #RADeepNetwork #RADeep #RareDiseases

🗓On April 11, #RADeep hosted an in-person Hands-On Session on Data Entry at @VHIR_ , Barcelona. 🌍Participants joined from Belgium, Portugal, Denmark, Norway, the Netherlands, Spain, Italy, and Greece. ​▶️​Find out more www.radeepnetwork.eu #RareDiseases #hematology

🚀The new RADeep REDCap Platform is live! A major step forward for rare anemia data collection and management across Europe. This updated version offers significant improvements in: ✅Data visualization ✅Quality control ✅Overall efficiency in managing information #RADeep #hematology

🩸🎥​On #WorldSickleCellDay RADeep and the @erneurobloodnet.bsky.social are proud to launch a 2-minute animated video co-created with adolescents and young adults living with #SCD across Europe. 🔗Available in 8 languages​: youtube.com/playlist?lis... #SickleCellDisease #SickleCell

🌍🩸​#WorldSickleCellDay RADeep: Advancing Research in Sickle Cell Disease 📊​Currently, the #RADeep registry includes comprehensive clinical, epidemiological, and laboratory data from 3,580 pediatric and adult patients with #SCD, spanning 8 European countries*. #WSCD25

🌍​🩸​@mmanupe.bsky.social , #RADeep coordinator, presented innovative sequencing techniques for the diagnosis of rare anemias. She introduced RADeep uRADAR, a new referral framework designed to support patients affected by ultra-rare anemias (uRADs) across the EU. 🔗​ radeepnetwork.eu #EHA2025

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

🩸🌍 RADeep Network is at #EHA2025! The #RADeep Network team is on site at the European Hematology Association (EHA) Congress 2025, connecting, sharing and advancing knowledge about rare anaemia disorders across Europe. 📍 Come meet us at the ERN-EuroBloodNet booth! #hematology #EHA2025

🎙️Discover RADeep’s mission and impact! 🔎 Did you know? #RADeep is endorsed by the European Rare Blood Disorders Platform (#ENROL) and the European Hematology Association (EHA)! 👉 Don’t miss it! lnkd.in/d5YeJn55 #RADeepNetwork #RareDiseases #RareAnaemia #PatientRegistry #HealthcareInnovation

🩸🌍The RADeep Network is now live on social media! 🔎What is #RADeep? Established in 2017, RADeep is the European patient registry platform dedicated to rare anemia disorders (RADs), serving as an umbrella for both new and existing patient registries across Europe.