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

🚀 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!

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#RareBoost#ERDERA#RareDiseases #HealthResearch

📍 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

🚀 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

🚀 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

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

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

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! 👀

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

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

🎉 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

🚀 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

🚀 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

🎉 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

📸 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#GDI#ERDERA #GDI #RareDiseases #Genomics

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

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

🌍 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#EURORDIS#ERDERA#RareDiseases

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

⏳ 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#WODCEurope#RareDiseases#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 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#ERDERA

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#RareDiseases#RareCancers#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#ATMP#ERDERA #RareDiseases

🔔 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#ERDERA

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

🌍 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#EURORDIS#ERDERA#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#ERDERA #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#EURORDISKnow 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#ERDERA🔁 Repost: Help us spread this info!

📢 Coming in May 2026: #EURORDIS Open Academy in Barcelona! Applications open 8 Sept 2025 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#EURORDIS#ERDERA#RareDiseases

🔬 CRISPR-Cas has transformed genome editing—from basic science to clinical therapies. Join experts at the EMBO Workshop to explore the latest advances in #CRISPR tech. 📍 Sorrento, Italy 📅 2–5 Nov 2025 🔗 https://loom.ly/G7HR4Eg

🚀 Want to lead the way in #RareDisease research? Subscribe to #ERDERA’s newsletter! 📩 ✅ Big news first ✅ Expert tips & tools ✅ Breakthroughs that matter ✅ Community highlights Don’t miss a beat 👉 https://loom.ly/NxMGydc

Last chance to make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research. 🔐 Confidential & 🤝 Co-created with patients 🔗 Take the survey: https://shorturl.at/ePVuL 📄 Learn more: https://shorturl.at/c03db

🚀 Registration is 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