RADeep Network

📢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

📣 #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

🌍 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

RADeep 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

📣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

RADeep

📌 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...

🚀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

Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story - YouTube Transitioning from Pediatric to Adult Care with Sickle Cell Disease – Patients Story (Multilingual Versions). This video is available in this playlist with t...

🩸🎥​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

🤝​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

🌍🩸​#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

🎧#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.

🎙️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

🔗 Follow us to stay updated on insights, progress, and impact from the RADeep community: bit.ly/4dOrbsf
#RareDiseases #RareAnemia #PatientRegistry #RADs #thalassemia #thal #SickleCellDisease #SCD

💡 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.

🔬#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

🎯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.

🩸🌍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.