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erdera.bsky.social
ERDERA
@erdera.bsky.social
220 followers 75 following 150 posts
Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe.
🔗 erdera.org
Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
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erdera.bsky.social
🌍 Join ERDERA’s free two-morning online workshop (20–21 Nov) to explore new evidence, share best practices & co-create practical solutions for more inclusive research. 👉 Find out more and register: https://loom.ly/mvCfTg0 #ERDERA
Networking of underrepresented countries for the enhancement of rare disease research - ERDERA
Presenting new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development.
erdera.org
November 14, 2025 at 8:57 AM
erdera.bsky.social
The countdown is on! ⏰ The International CRN conference is almost here, with speakers from across the globe and an inspiring programme ahead. 🌍 Join us for free, in person or online (registration required).
👉 Secure your spot now: https://loom.ly/yceyPYw
👉 Find out more: https://loom.ly/1fhf8zI
November 13, 2025 at 12:25 PM
erdera.bsky.social
Round 2 of ERDERA’s Networking Support Scheme is open! Apply for funding to host transnational events that boost collaboration, research uptake and knowledge sharing in #RareDiseases and #RareCancers.
👉 See more: https://loom.ly/scOFS9w
Networking Support Scheme - ERDERA
ERDERA's Networking Support Scheme helps promote knowledge sharing on rare diseases and rare cancers through the funding of events. It also encourages the participation from underrepresented European countries in networks.
erdera.org
November 10, 2025 at 8:01 AM
erdera.bsky.social
🚀 Not long to go for the 2nd International Conference on Clinical Research Networks! 🚀 A key global event on clinical research networks, with great speakers & chairs lined up!
Full programme & registration👉 https://loom.ly/1fhf8zI
🚨 Limited in-person spots available!
November 6, 2025 at 7:37 AM
erdera.bsky.social
Join the IBG #RareBoost seminar! 💡
📅 12 Nov, 11:00 | 📍 Aziz Sancar Auditorium (IBG)
🎤 Basak Usyal, Senior PM for #ERDERA’s Data Service Hub, presents “ERDERA as a strategic backbone for Europe’s rare disease ecosystem.” Join here 👉 https://loom.ly/a8O3Yos
#RareDiseases #HealthResearch
ERDERA as a Strategic Backbone for Europe’s Rare Disease Ecosystem by Başak Uysal · Zoom · Luma
ERDERA as a Strategic Backbone for Europe’s Rare Disease Ecosystem by Başak Uysal
luma.com
November 5, 2025 at 2:51 PM
erdera.bsky.social
📍 ERDERA at the Cohort Innovation Day 2025! Today ERDERA partners Stefanie Haeberle, Marco Roos & Daria Julkowska shared how cohorts & data can drive innovation across Europe at the Imagine Institute in Paris. 💫 #ERDERA #HealthData #ResearchInnovation #RareDiseases
November 5, 2025 at 2:09 PM
erdera.bsky.social
🚀 That’s a wrap on ERDERA’s 2nd General Assembly! Three inspiring days of scientific exchange, strategy & collaboration — advancing research & innovation in the rare disease ecosystem. Huge thanks to Amsterdam UMC for hosting and to all partners for their energy & commitment! 💡 #ERDERA
October 31, 2025 at 3:18 PM
erdera.bsky.social
🚀 The #ERDERA General Assembly has kicked off, marking one year after the launch!
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
October 30, 2025 at 2:18 PM
erdera.bsky.social
ERDERA’s Multistakeholder Advisory Board (MAB) met in person for the first time – a key milestone one year after the project’s launch. The MAB provides strategic guidance to ensure ERDERA’s research remains patient-centred. ✨ More details soon! #ERDERA #RareDiseases #HealthResearch
October 29, 2025 at 5:55 PM
erdera.bsky.social
That’s a wrap on an inspiring #WODC2025! 🌍
The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC
October 29, 2025 at 1:46 PM
erdera.bsky.social
Day 2 at #WODC — inspiring exchanges with experts advancing #RareDisease research! 💡 The #ERDERA booth was buzzing, and partners Viviana Giannuzzi, Maurizio Scarpa & Daria Julkowska shared their insights on stage. Recap coming soon! 👀
October 28, 2025 at 7:18 PM
erdera.bsky.social
Hello #WODC2025 👋
Day 1 kicks off with workshops—and we’re thrilled to be part of it!
🚀 ERDERA, RealiseD & Inventis is leading the biggest session on innovative methodological approaches. Stay tuned for session insights here & on our website!
#RareDiseases #OrphanDrugs #ERDERA
October 27, 2025 at 11:43 AM
erdera.bsky.social
Join the 2nd Int. Conference on Clinical Research Networks for Rare Diseases!
📅 9–10 Dec 2025 🌍 Theme: Mobilising the global rare disease clinical research ecosystem.
Be part of a global effort to strengthen collaboration & innovation.
👉 Register now: https://loom.ly/1fhf8zI
October 24, 2025 at 9:44 AM
erdera.bsky.social
🎉 1 week to go! Join the ERDERA Open Session 2025 on 30 Oct — celebrating 1 year of progress in rare disease research and hear from inspiring speakers.🧬
🔗 Register to join: https://loom.ly/j4k2yns
🔗 About the speakers: https://loom.ly/s6JSgbU
#ERDERA #RareDiseases
October 23, 2025 at 11:10 AM
erdera.bsky.social
🚀 The ERDERA 2026 Call for Proposals pre-announcement is live! 🧬 Theme: Resolving unsolved cases in rare genetic and non‑genetic diseases through variant validation and new technological approaches.
📄 Read the pre-announcement: https://loom.ly/YzdmNGY
🔗 More info: https://loom.ly/FOw1yrM
October 22, 2025 at 7:33 AM
erdera.bsky.social
🚀 Just one week to go until the ERDERA Open Session! 🚀
Join us on 30 Oct (9:00–11:20 CET) for an inspiring online event open to the entire rare disease community — and discover ERDERA’s progress after its first year! 🗓️ Free to attend – register now: https://loom.ly/j4k2yns
October 21, 2025 at 6:16 AM
erdera.bsky.social
🎉 One week to go for the World Orphan Drug Congress 2025 — a global forum driving innovation and collaboration in #OrphanDrugs and #RareDiseases. 📍 Visit ERDERA at Booth 10.512!
🎟️ Free tickets for patient groups: https://loom.ly/vDD9hwI
More info: https://loom.ly/a5bnWok
October 20, 2025 at 7:41 AM
erdera.bsky.social
📸 The start of something exciting! Yesterday was the official launch of the collaboration between ERDERA and #GDI — joining forces to accelerate rare disease research and improve diagnosis across Europe. 🚀 Find out more: https://loom.ly/7lthRbQ
#ERDERA #GDI #RareDiseases #Genomics
October 17, 2025 at 10:01 AM
erdera.bsky.social
What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀 https://loom.ly/FCHBS38
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October 16, 2025 at 7:15 AM
erdera.bsky.social
Regulatory news | 🗞️ The EMA and EU partners have released the final report of the EU Repurposing Pilot, supporting new uses for off-patent medicines in rare diseases and paediatric care.
🔗 Access the report: https://loom.ly/zcpVZfg
👉 Find out more: https://loom.ly/afsfGWA
#ERDERA #RareDiseases
EMA concludes pilot to support repurposing of established medicines - ERDERA
Accelerating evidence-driven innovation to unlock fresh indications for established therapies.
loom.ly
October 15, 2025 at 10:21 AM
erdera.bsky.social
🌍 A global success! The FAIR Training Webinar, hosted by World Duchenne Organisation with #ERDERA, united experts from 58 countries to strengthen FAIR data practices in #RareDisease research.
350 registered | 160 avg. participants | Next: Parts II & III ahead!
👉 More: https://loom.ly/nAc1dQA
Global audience joins FAIR Training Webinar to strengthen data practices in rare disease research - ERDERA
A successful training event with 350 registrations from 58 countries and daily attendance averaging 160 participants
erdera.org
October 15, 2025 at 6:55 AM
erdera.bsky.social
🔬 Exciting news: ERDERA joins forces with the European Genomic Data Infrastructure project (GDI) to advance rare disease research and diagnosis across Europe. Launching 14 Oct in Paris. 🌍 👉 Read more: https://loom.ly/7lthRbQ
#RareDiseases #GenomicData #1MGenomes
ERDERA and the European Genomic Data Infrastructure project work together to strengthen rare disease data, diagnostics and research - ERDERA
Fruitful collaboration ahead
erdera.org
October 13, 2025 at 4:23 PM
erdera.bsky.social
💡 Registration is open for the @ihieurope.bsky.social Brokerage Event 2025! Meet partners, pitch ideas & get guidance to prepare for the next EU-funded IHI call in early 2026. 📍 Brussels (4–5 Nov) + online (6 Nov)
🔗 Register: https://loom.ly/O0KYC0E
IHI Call 12- Brokerage Event and Platform
Meet partners, pitch ideas & get guidance to prepare for the next EU-funded IHI call in early 2026.
ihicalldays2025.converve.io
October 13, 2025 at 7:31 AM
erdera.bsky.social
📣 Applications are now open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
October 9, 2025 at 10:02 PM
erdera.bsky.social
Round 1 of ERDERA’s Networking Support Scheme has closed.
But good news — Round 2 is now open! Apply for funding to host transnational events that boost collaboration, research uptake and knowledge sharing in #RareDiseases and #RareCancers.
👉 See more: https://loom.ly/scOFS9w
Networking Support Scheme - ERDERA
ERDERA's Networking Support Scheme helps promote knowledge sharing on rare diseases and rare cancers through the funding of events. It also encourages the participation from underrepresented European countries in networks.
erdera.org
October 8, 2025 at 7:09 AM