RADeep Network @radeep.bsky.social · 07/10/2026Thank you to all national coordinators, data managers and centres who make this possible! 🤝 Being a network is what makes RADeep work! #RareAnaemias #SickleCellDisease #RealWorldEvidence #EHDS @erneurobloodnet.bsky.social 000
RADeep Network @radeep.bsky.social · 07/10/2026Highlights from the day: 🔹 Working with the @ema.europa.eu on registry qualification 🔹 ~80% aligned with the European Health Data Space 🔹 New platforms: RADiANT-CT & RADiANT-CORE 🔹 Real-world data for better sickle cell disease endpoints 🔹 CRF revision by 6 expert groups 100
RADeep Network @radeep.bsky.social · 07/10/2026🎯 A registry is only as strong as the network behind it. On 17 Sept, the RADeep Data Access Committee met in Barcelona with 21 participants from 9 European countries 🌍 📊 ~7,000 patients from 10 countries 🧬 16 disease groups 🏥 115 hospitals registering patients 🧵 100
RADeep Network @radeep.bsky.social · 02/03/2026🚀 Join RADeep team at @vhir.bsky.social in Barcelona! 🚀 🔹 Data Engineer 👉 lnkd.in/d6Mkwg5q 🔹 Data Manager 👉 lnkd.in/dBsZrTXF #Hiring #DataEngineer #DataManager #RealWorldEvidence #CareerOpportunity #RADeep #RADs 000
RADeep Network @radeep.bsky.social · 18/02/2026📢We are looking for a Senior Scientific Coordinator to join the RADeep team! 👉 If you have experience in scientific project coordination and enjoy working in international environments, we would love to hear from you! lnkd.in/eqcphE42 📅 Deadline: 23/02/2026 010
RADeep Network @radeep.bsky.social · 09/02/2026📣 #Hiring alert: Biostatistician to join our Data Driven Team at @vhir.bsky.social in Barcelona! 📅 Deadline to apply: February 16th, 2026 🔗Apply now and join our team! lnkd.in/enYKUK58 000
Reposted by RADeep NetworkERDERA @erdera.bsky.social · 12/01/2026🌍 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: loom.ly/kNumRPA 032
RADeep Network @radeep.bsky.social · 07/12/2025📣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 010
RADeep Network @radeep.bsky.social · 02/12/2025📍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 010
RADeep Network @radeep.bsky.social · 26/11/2025RADeep Presentations at #ASH25: ✅https://meetings-api.hematology.org/api/abstract/vmpreview/296257 ✅https://meetings-api.hematology.org/api/abstract/vmpreview/296645 ✅https://meetings-api.hematology.org/api/abstract/vmpreview/296662 ✅https://meetings-api.hematology.org/api/abstract/vmpreview/293040 000
RADeep Network @radeep.bsky.social · 26/11/2025📣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. 110
Reposted by RADeep NetworkAmerican Society of Hematology @ash.hematology.org · 03/11/2025The wait is over! Abstracts selected for #ASH25 are now live: ow.ly/h53J50XlPNr Congrats to all presenters! Don't miss these presentations in person or virtually — register now! #HemeSky #MedSky 072
Reposted by RADeep NetworkSYNTHEMA @synthemaeu.bsky.social · 28/10/2025SYNTHEMA 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 142
Reposted by RADeep NetworkSYNTHEMA @synthemaeu.bsky.social · 02/10/2025Through 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. 021
Reposted by RADeep NetworkERN EuroBloodNet @erneurobloodnet.bsky.social · 03/10/2025✅ 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 021
RADeep Network @radeep.bsky.social · 26/09/2025📣#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... 011
RADeep Network @radeep.bsky.social · 25/09/2025✅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 010
RADeep Network @radeep.bsky.social · 10/09/2025📢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 010
RADeep Network @radeep.bsky.social · 20/08/2025🗓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 010
RADeep Network @radeep.bsky.social · 13/08/2025📌 RADeep Epidemiological Data Public dashboard – available in real time on our website, providing all stakeholders with an overview of all patients registered in RADeep (updated daily) 🔗 Explore the Public Dashboard on our website: www.radeepnetwork.eu/epidemiologi...radeepnetwork.euRADeep 000
RADeep Network @radeep.bsky.social · 13/08/2025🚀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 100
RADeep Network @radeep.bsky.social · 19/06/2025🩸🎥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 #SickleCellyoutube.comTransitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story - YouTubeTransitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story (Multilingual Versions). This video is available in this playlist with t... 010
RADeep Network @radeep.bsky.social · 19/06/2025🤝This #WorldSickleCellDay, we reaffirm our commitment to data-driven collaboration and patient-centered care. *manuscript in preparation authored by the RADeep Team. #SickleCell #sicklecelldisease #shinethelightonsicklecell #WSCD25 000
RADeep Network @radeep.bsky.social · 19/06/2025🌍🩸#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 100
RADeep Network @radeep.bsky.social · 16/06/2025🌍🩸@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 000
Reposted by RADeep NetworkSYNTHEMA @synthemaeu.bsky.social · 12/06/2025We’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 022
RADeep Network @radeep.bsky.social · 14/06/2025🩸🌍 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 000
RADeep Network @radeep.bsky.social · 10/06/2025🎧#EHAUnplugged episode "Revolutionizing Patient Registries to Promote Research and Improve Health Outcomes" where @mmanupe.bsky.social , RADeep Coordinator, takes us through RADeep’s mission to unite European patient registries for rare anemia disorders, aiming to improve research and patient care. 000
RADeep Network @radeep.bsky.social · 10/06/2025🎙️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 #HealthcareInnovationlnkd.inLinkedInThis link will take you to a page that’s not on LinkedIn 100
RADeep Network @radeep.bsky.social · 05/06/2025🔗 Follow us to stay updated on insights, progress, and impact from the RADeep community: bit.ly/4dOrbsf #RareDiseases #RareAnemia #PatientRegistry #RADs #thalassemia #thal #SickleCellDisease #SCDbit.lyRADeep 000
RADeep Network @radeep.bsky.social · 05/06/2025💡 Our focus Rare anemias—including thalassemias, sickle cell disease (SCD), and other inherited red blood cell disorders—are at the heart of our mission. 📸The 2024 RADeep Data Access Committee Meeting - where collaboration & commitment to rare anemia research come together. 100
RADeep Network @radeep.bsky.social · 05/06/2025🔬#EUfunded projects have already adopted RADeep’s standards for developing clinical datasets in rare anaemias. Genomed4all – Genomics & AI for personalized care @synthemaeu.bsky.social – Synthetic data for haematological research @erdera.bsky.social – European Rare Diseases Research Alliance 120
RADeep Network @radeep.bsky.social · 05/06/2025🎯Our mission To optimize the public benefits derived from standardized data collection on RADs by: •Establishing a frame for surveillance of RADs at the European level. •Facilitating the identification of patient cohorts for clinical research studies and access to treatments. 100
RADeep Network @radeep.bsky.social · 05/06/2025🩸🌍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. 120
