ERDERA

📸 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

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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

EMA concludes pilot to support repurposing of established medicines - ERDERA Accelerating evidence-driven innovation to unlock fresh indications for established therapies.

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

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

🌍 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

🔬 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

💡 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

📣 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

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.

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

🎉 ERDERA turns one! Join our free online event on 30 Oct (09:00–11:20 CET) — featuring top experts in neurology, neurometabolic diseases, and patient advocacy. 🔗 Register now & see the speakers: https://loom.ly/ziWSd9o
#RareDiseases #ERDERA #Neurology #PatientAdvocacy

ERDERA, RealiseD and INVENTS to lead workshop at WODC Europe 2025 - ERDERA Less than a month to the World Orphan Drug Congress Europe.

⏳ Less than a month to #WODCEurope!
On 27 Oct at 10:00, ERDERA, RealiseD & INVENTS lead a workshop on innovative trial design & evidence generation in #RareDiseases, chaired by Daria Julkowska.
Don’t miss it! Register with code ERDERA20 🔗 https://loom.ly/kg5KUrA
#OrphanDrugs #ClinicalResearch

🧬 Rare disease research needs action — not just talk.
Join us in Heidelberg (or online) for the 2nd CRN Conference, 9–10 Dec 2025. Free in-person spots still available! 🔗 Find out more: https://loom.ly/NioS23M 🔗 Register: https://loom.ly/1fhf8zI #RareDiseases #CRN2025

ERDERA at the 15th Balkan Congress of Human Genetics and 3rd Alpe Adria Meeting: a hub for innovation in genomic medicine - ERDERA ERDERA at the 15th Balkan Congress of Human Genetics & 3rd Alpe Adria Meeting: A Hub for Genomic Medicine Innovation

ERDERA will be at the 15th Balkan congress of human genetics and 3rd Alpe Adria meeting of human genetics. Hear from Prof. Macek Jr., Dr. van der Sanden & Prof. Ossowski on rare disease genomics. 🔗 Read more about #ERDERA’s participation: https://loom.ly/HszLOSo

September is Newborn Screening Month! ERDERA launches its first scientific pill on the importance of equitable screening—marking the start of many more to come. 👉 Read the first one here: https://loom.ly/28UA3H8
#RareDiseases #ERDERA #EuropeanCollaboration

🚨 Last chance! The first round of ERDERA’s Networking Support Scheme closes 7 Oct 2025.
A unique opportunity to boost knowledge exchange on #RareDiseases & #RareCancers 🌍.
👉 Apply now & share with your networks: https://loom.ly/scOFS9w #ERDERA #RareDisease #Funding #ResearchFunding

⏰ Last chance to register!
The FAIR Training Webinar 2025 starts today (23–25 Sept) with 3 afternoons of expert talks, case studies & interactive sessions on making rare disease data FAIR.
👉 Register before 12:00 CET: https://loom.ly/2LIMvJo
📌 Agenda: https://loom.ly/qOkVzXw

ERDERA hosted a 2‑day workshop in Heidelberg to prioritise rare diseases for #ATMP development. Researchers, clinicians & patient advocates co‑designed a framework for earlier, more consistent therapy decisions. 🔗 Read more: https://loom.ly/TpIe68c #ERDERA #RareDiseases

Solvathons: A Pan-European Success Story in Rare Disease Diagnosis - ERDERA Newly accepted Nature Genetics article inspires ERDERA’s plan to scale up cross-border collaborative workshops

🔔 New article | Solvathons are now a key part of ERDERA’s strategy to speed up rare disease diagnosis across Europe. Hear from experts shaping this collaborative model and read more here 🔗 https://loom.ly/UdpIQcU
#RareDiseases #ERDERA #Solvathons

ERDERA's Open Session agenda now public! 🎉 Join our Open Session on 30 Oct for insights from experts in neurology, neurometabolic diseases & patient advocacy.
💡 Free to attend – registration required.
👉 Register: https://loom.ly/j4k2yns
🔎 More details: https://loom.ly/ziWSd9o #ERDERA

📣 Calling for experts from Underrepresented Countries! 🌍
#ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more.
Interested? 👉 https://loom.ly/YUHruUQ

Are you working to advance research in rare diseases or rare cancers? This is for you! Apply to ERDERA’s Networking Support Scheme by 7 Oct 2025 ⏰ 🔗 Find more information on applying here: https://loom.ly/CwIvcvM
#ERDERA #ResearchFunding

Shaping the future of global rare disease research: Join the 2nd International Conference on Clinical Research Networks - ERDERA ERDERA is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with Rare Disease International and the International Rare Diseases Research Consortium (IRDiRC).  

🌍 Registration is open for the 2nd International Conference on Clinical Research Networks! 📅 9–10 Dec 2025 | Hybrid
Spotlighting RWE, diagnostics, research design, stakeholder engagement, care models & more!
🔗 Register: https://loom.ly/5Yw_6KU #RareDiseaseResearch #RareDiseases #ClinicalResearch

📣 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

🚀 Be part of ERDERA’s 1st anniversary Open Session on 30 Oct! Hear inspiring voices in neurology, neurometabolic diseases & patient advocacy, and discover how #ERDERA is transforming rare disease research.
🔗 Find out more and register: https://loom.ly/6r3obgE
#RareDiseases

Stop by booth 10.512! 👋
ERDERA will be at #WODC2025 (27–28 Oct, Amsterdam) – ready to connect with peers and partners and push rare disease research forward. See you there! #RareDisease #Collaboration #ERDERA

🚀 Registrations are still open for the FAIR Training Program 2025!
Learn how to make rare disease data more Findable, Accessible, Interoperable & Reusable. 🗓 24–26 Sept | 💻 Online | 🎓 Free
Limited places—register now 👉 https://loom.ly/8q3ieQQ
#FAIRdata #ERDERA #RareDiseases

Living with a #RareDisease can pose many challenges. A long wait from symptoms to diagnosis and limited or no appropriate treatment options are common for individuals with rare diseases. #ERDERA is dedicated to changing this 👉 Visit out website to find out more: https://loom.ly/V6aLWKI

Applications open soon! From 25–28 May 2026, Barcelona hosts the #EURORDIS Open Academy Schools 🧑‍🎓
📣 Applications open: 8 Sept 2025
🔗 More info at https://loom.ly/uZ0Iz8M
Know someone who’d love this? Repost and spread the word! 🔁
#RareDisease #OpenAcademy #ERDERA

“Data is the fuel of ERDERA’s mission.” 🧬✨
Prof. Ronald Cornet on why high-quality, FAIR data is key to faster diagnosis, better treatments, and stronger collaboration in rare diseases.
🔗 Read the full interview: https://loom.ly/O8mNwZg
#RareDiseases #ERDERA #FAIRdata

🚀 The countdown is on! This year, ERDERA will be present at the #WODC, the world’s leading event for #RareDiseases, bringing together 2,000+ attendees, 250+ speakers & 130+ exhibitors.
🗓️ 27–29 Oct 2025, Amsterdam
🔗More information at https://loom.ly/sG0eXT0

📢 Exciting news — the #ERDERA Networking Support Scheme is now open for applications! 👉 If you are working to advance research in #RareDiseases or rare cancers, this could be the funding opportunity you're looking for!
🔗 Find out more: https://loom.ly/CwIvcvM
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