🔬 AI and ATMPs are reshaping rare disease research. Join ERDERA’s new Ethics & Regulatory Webinar Series to stay ahead. 🔗 Find out more and register: https://loom.ly/dh8UKe0 #ERDERA #RareDiseases #ResearchEthics #ATMP

🎯 Our first policy brief explores how ERDERA and the ERNs can support the implementation of the proposed European Biotech Act, helping translate scientific excellence into innovation and patient benefit for rare diseases. 🔗 Read: https://loom.ly/Bkq9-_E 👉 Find out more: https://loom.ly/Nnydn-Y

📣 Working in rare disease research? Join us on 24 July for a free webinar and explore how ethics applies across different research activities, illustrated through a real-world case study that brings the concepts to life, 🎤 with Jaime Flamenbaum. 🔗 Register: https://loom.ly/hpvjx6Q #ERDERA

🧩 How can national rare disease registries drive better research across Europe? 💡 At ERDERA’s National Mirror Groups workshop in Riga, experts shared lessons on creating, evolving and using registries to strengthen collaboration and research. Find out more🔗 https://loom.ly/Br-vMRA

🚨 ERDERA Clinical Trial Call now open! Supporting multinational Phase I–II trials in rare diseases. 🔎 Explore the call: https://loom.ly/climfrw 🎓 Webinar 6 July. Register at https://loom.ly/Zey54D0 🔁 Help spread the word! #ERDERA #RareDiseases

🏛️ The European Commission has opened a call for evidence on future EU Partnerships (2028–2034). A key chance to shape collaborative research across Europe, , including #RareDiseases. ⏳ Open until 14 July 2026 🔗 Read more: https://loom.ly/eeFItjs

European Commission opens call for evidence on future Joint Undertakings - ERDERA

Feedback is open until 14 July 2026, giving stakeholders an early opportunity to comment during the preparation of a likely legislative proposal for a Council regulation.

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📬 Missed the ERDERA newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here 👉 https://loom.ly/NJj5MMw 📩 Don’t miss the next issue, subscribe now: https://loom.ly/TFRXEBY

🧬 Nearly 100 experts came together at #ESHG2026 for the ERDERA Diagnostic Research Workstream annual meeting, a key moment to exchange insights and move rare disease diagnostics forward. Curious about what was discussed? 👉 Discover the highlights: https://loom.ly/Ht_R_Ag #RareDiseases #ERDERA

Have you registered yet? 👀 🚀 ERDERA Clinical Trial Call 2026 launches 1 July 🧬 Supporting multinational early‑phase trials in rare diseases Join our webinar (6 July, 15:00–17:00) for guidance + Q&A with experts. 🔗 Find out more and register at: https://loom.ly/Zey54D0 #ERDERA #RareDiseases

“In rare diseases, feasibility is often the first scientific question” - Daria Julkowska. 📍 At the #WODC USA, ERDERA’s Scientific Coordinator contributed to discussions on advancing rare disease research and bringing innovations closer to patients. 🔗 Read the full article: loom.ly/bpTilRs

At World Orphan Drug Congress USA, ERDERA highlights how connected clinical research networks can make rare disease trials more feasible - ERDERA

Boston, 9–11 June 2026: ERDERA's Scientific Coordinator joined the World Orphan Drug Congress USA to set out how stronger clinical research networks can make rare disease trials more feasible across s...

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🌍 How are clinical research networks advancing rare disease research worldwide? Highlights from the 2nd CRN Conference are now live 👇 📄 Access the event report: https://loom.ly/kmtHQKc #RareDiseases #ClinicalResearch

How do we move from rare disease dialogue to real EU action? 🤔 At #ECRD2026, the community pushed for a stronger, coordinated response, with the upcoming European Blueprint at its core. 👉 Find out more about the key reflections from the event: https://loom.ly/B6eOnrw #RareDiseases #ERDERA

What is ERDERA, and why does it matter? 🤔 30 million people in Europe live with a rare disease. Yet most still lack a diagnosis or treatment. So what is ERDERA doing about it? Watch the short video: https://loom.ly/c9rVqRA 🔁 #ERDERA #RareDiseases @ec.europa.eu

⏳ Almost time! Next week, Daria Julkowska will be at #WODCBoston 🇺🇸 as keynote speaker in two sessions 👀 🔗 Explore the topics: https://loom.ly/ilxeQfk #RareDiseases #ERDERA

🚀 Want to lead the way in #RareDisease research? Subscribe to #ERDERA’s newsletter! 📩 ✅ Big news first ✅ Expert tips & tools ✅ Breakthroughs that matter ✅ Community highlights Subscribe at 👉 https://loom.ly/NxMGydc

🚨 ERDERA Clinical Trial Call 2026 pre‑announcement is live Planning to apply? Start preparing now 👉 https://loom.ly/x0LNqMY 📅 Launch: 1 July 2026 🎓 Join the webinar (6 July): https://loom.ly/Zey54D0 🔁 Share with your network #ERDERA #RareDiseases #ClinicalTrials

🌍 At a pivotal moment for Europe, ERDERA gathered NMGs, EU stakeholders & global partners in Sofia with one goal: stronger alignment to accelerate research & impact. 🎥 Watch the insights: https://loom.ly/y2IkYOY 👉 https://loom.ly/K2bkDP8

In a new article, Marta Campabadal reflects on the first #OpenAcademy x ERDERA Mentoring Programme pilot and the power of peer support in the rare disease community. 📌 Read more and become a mentor: https://go.eurordis.org/blogstaff

From hospitals to genomic research centres, participants at the #EURORDISOpenAcademy x ERDERA Schools’ training week are experiencing rare disease #research and care in #action. 🏥 Stay tuned to follow their journey throughout the week!🚀 @erdera.bsky.social

That’s a wrap on the 2026 EURORDIS Open Academy x ERDERA Schools’ in-person training week! 👏 Congratulations to all participants on completing their trainings, we look forward to welcoming you to our active alumni community!

👉 Want to learn how rare disease diagnoses are evolving? Join our new online learning series and explore the latest advances shaping the future of healthcare, launching 28 May 2026. 🚀 🔗 Learn more and register: https://loom.ly/mH7fD24

🚀 New ERDERA webinar series launching 28 May 2026! Advancing #RareDiseases Diagnostics will explore the full journey of the Diagnostic Research Workstream, from governance & data to innovation and results. 👉 Find out more and register: https://loom.ly/mH7fD24

The Open Academy x ERDERA Schools are back, bringing together patient advocates and researchers for 4 days of training, collaboration and peer learning in rare disease research. Strengthening skills. Building partnerships. Advancing participation. 👉 Find out more: https://loom.ly/fX1YYJQ

Open Academy x ERDERA Schools return to Barcelona to strengthen rare disease research participation - ERDERA

From 25–28 May in Barcelona, the EURORDIS-led Open Academy x ERDERA Schools will bring patient advocates and early-career researchers together for four days of rare disease training, exchange and peer learning.

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🗞️ The @ec.europa.eu has opened a Call for Evidence on #BiotechActII 💡 Share your input on challenges & bottlenecks 📅 Open until 10 June 2026 🔗 Learn more and have your say: https://loom.ly/0GE3oew #EUResearch #Innovation

📣 Join our webinar on 28 May to discover how ERDERA is advancing rare disease diagnostics. 🕐 13:00–14:00 CEST, online 🔗 Find out more and register: https://loom.ly/eZk0EsA

📍 ERDERA Policy Think Tank met in Paris to explore how registry data can better support rare disease research and policy across Europe. 🔗 Find out more about the meeting: https://loom.ly/wjYYzdc #ERDERA #RareDisease

🎓 Unlocking knowledge in #RareDiseases Explore the new ERDERA Learning Portal — your hub for curated courses & training resources for researchers, clinicians & the wider community 🌍 👉 Discover the portal: https://loom.ly/mFHgMVI #RareDiseases #ERDERA

💡 What is PPIE — and why is it such a central concept in ERDERA? Our latest Knowledge Pill explores Patient and Public Involvement and Engagement (PPIE): what it is, why it matters, who is involved, and how #ERDERA puts it into practice. 🔗 Find out more: https://loom.ly/FWzBQpg #RareDiseases

🧬 Undiagnosed Day 2026 | Where diagnosis becomes hope | Day 2 From individual cases to the systems shaping diagnosis. Experts highlighted collaboration, data sharing and advanced diagnostics as key to improving access to answers. 👉 Read the full recap: https://loom.ly/k2ugfLw

🧬 Undiagnosed Day 2026 | Where diagnosis becomes hope | Day 1 In Gdańsk, patients and families met expert clinicians for dedicated diagnostic sessions, putting lived experience at the heart of care. More info soon 🔜 #UndiagnosedDay2026 #RareDisease #Undiagnosed