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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
Final chance to register for the 2nd International Conference on Clinical Research Networks! 📩
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
2nd International Conference on Clinical Research Networks: Connected for impact - ERDERA
ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with …
erdera.org
November 25, 2025 at 8:55 AM
erdera.bsky.social
Coordinator Daria Julkowska presented #ERDERA at the 2025 annual meeting of Enpr-EMA (European network of paediatric research at EMA) 🔬 and highlighted how collaboration with the paediatric research community can be further strengthened 🤝 A very fruitful meeting with exciting opportunities ahead!
November 24, 2025 at 1:34 PM
erdera.bsky.social
💜 100 days left until Rare Disease Day 2026! #ERDERA is proud to stand with partners across Europe to turn visibility into action and ensure lived experience shapes research, care and policy.
👉 Read more: https://loom.ly/ii7_OJg #eurordis
Unity in action: Rare Disease Day 2026 campaign launches with a renewed focus on equity - ERDERA
A global movement, coordinated by EURORDIS in partnership with 72 national alliances, amplifying representation and accelerate fair access to diagnosis, care and research.
erdera.org
November 20, 2025 at 1:43 PM
erdera.bsky.social
📣 Join our webinar on the 2026 Joint Transnational Call!
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
November 20, 2025 at 8:01 AM
erdera.bsky.social
Only 3 weeks to go!🚀 Join the 2nd International Conference on Clinical Research Networks, spotlighting global alignment on rare-disease data, diagnostics and CRNs.
📅 9–10 Dec 2025 (Hybrid)
🗣️ Programme: https://loom.ly/1fhf8zI
👉 Register: https://loom.ly/yceyPYw
#ERDERA
2nd International Conference on Clinical Research Networks: Connected for impact - ERDERA
ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with …
erdera.org
November 19, 2025 at 8:15 AM
erdera.bsky.social
🌍 Secure your spot! #ERDERA is hosting a two-morning virtual #workshop (20–21 November) focused on strengthening collaboration in rare disease 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 17, 2025 at 11:01 PM
erdera.bsky.social
🚀 Survey re-opened! #ERDERA wants your input to shape practical consultancy support in rare disease research. Where do YOU need help most — ethics/regulation, data readiness, PPIE, IP, innovation...
📝 Let us know! Survey: https://loom.ly/IbXYIfw
🔄 Share with your networks!
Survey re-opened: help pinpoint where consultancy makes the biggest difference in rare disease research - ERDERA
Community input invited on practical consultancy needs in rare disease research.
erdera.org
November 17, 2025 at 8:21 AM
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