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RADeep Network @radeep.bsky.social · 07/10/2026

Thank 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

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RADeep Network @radeep.bsky.social · 07/10/2026

Highlights 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

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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 🧵

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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

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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

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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

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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

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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

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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.

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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...

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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

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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

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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

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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

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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

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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

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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

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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.

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