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⏳ Just one week to go! Join ERDERA’s Open Session 2026, a special anniversary event exploring how innovation, collaboration and novel clinical trial approaches are advancing rare disease research. 🔗 Discover the agenda, speakers and register now: loom.ly/j7dWpj4

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ERDERA @erdera.bsky.social · 12/10/2026

🧬 What ethical challenges arise in ATMP research, and how can resolving them become an advantage? Join the next #ERDERA Ethics & Regulatory Webinar with Joana Namorado. 📅 2 Nov 2026 | 13:00 CET 💻 Online 🔗 Find out more & register: loom.ly/lZ8lmm8 #RareDiseases #ATMP #ResearchEthics

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ERDERA @erdera.bsky.social · 07/10/2026

📣 Have you registered? On 21 October, ERDERA will host its Annual Open Session, a special anniversary event exploring how innovation, collaboration and novel trial methodologies are advancing rare disease research. ✅ Free to attend 📝 Find out more & register: loom.ly/j7dWpj4 #ERDERA

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ERDERA @erdera.bsky.social · 06/10/2026

💬 “By handling data in a structured and responsible way, we can build a shared European ecosystem.” Ana Rath, ERDERA Data Services Co-Lead, explains how ERDERA is helping make rare disease data more findable, interoperable and reusable. 👉 Read more: loom.ly/y83u7Nk #RareDiseases

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ERDERA @erdera.bsky.social · 01/10/2026

🏆 Celebrate the people and initiatives making a difference in rare diseases. Join the 15th #EURORDIS Black Pearl Awards on 24 Feb 2026, held in Brussels & online as part of #RareDiseaseDay celebrations. 🎥 Online participation is free. 👉 loom.ly/ClRoNdc #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 30/09/2026

⏳ The deadline is approaching! Want to expand your knowledge, connect with experts and help drive progress in rare diseases? Apply for the Open Academy x ERDERA Schools 2027 before 16 October. 📍 Barcelona, 7-10 June 2027 🔗 Apply now: loom.ly/uZ0Iz8M #ERDERA #RareDiseases

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ERDERA @erdera.bsky.social · 23/09/2026

📅 Hello, September! Start the month with new insights from ERDERA webinars for rare disease research: 🔹 How to Pitch to Investors 🔹 Data Sharing, Data Management & Ethics 🔹 Regulatory Insights for Advanced Therapies 👉 Learn more and register: erdera.org/latest/events

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ERDERA @erdera.bsky.social · 22/09/2026

🚀 Registrations are now open for RE(ACT) Congress 2027! Join researchers, clinicians, patient advocates, policymakers and innovators in Budapest from 10-12 March 2027 for three days of science, collaboration and ideas that can accelerate progress in rare diseases🔗 Register: loom.ly/_fGiC04

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ERDERA @erdera.bsky.social · 14/09/2026

🚀 Working on a #RareDisease innovation? Learn what investors look for and how to pitch your project effectively at ERDERA's upcoming webinar. 📅 16 Sept 2026 ⏰ 11:00 CEST 💻 Online Researchers, venture builders & VCs share practical insights. 🔗 Register: loom.ly/zp3wAJM #ERDERA

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ERDERA @erdera.bsky.social · 10/09/2026

📬 Miss the September newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here 👉 loom.ly/VxVn5mI 📩 Don’t miss the next issue, subscribe now: loom.ly/TFRXEBY #ERDERA #RareDiseases

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ERDERA @erdera.bsky.social · 03/09/2026

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ERDERA @erdera.bsky.social · 02/09/2026

Applications are now open for the EURORDIS Open Academy x ERDERA Schools! 🎓 Build the skills and networks to engage with researchers, regulators & policymakers 📍 Barcelona, 7-10 June 2027 ⏰ Apply by 16 October 2026 🔗 Learn more: loom.ly/F3Ka2j8 #ERDERA #RareDiseases

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ERDERA @erdera.bsky.social · 19/08/2026

📝 New ERDERA-supported publication A multicentre study analysed 661 assessments from 219 individuals with #SCA27B, providing new insights into disease progression, clinical outcome measures, age dependence, and factors influencing ataxia severity. 🔗 Read the publication: loom.ly/4YHACiQ

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ERDERA @erdera.bsky.social · 12/08/2026

⏳ One month left! The #ERDERA Clinical Trial Call supports multinational rare disease clinical trials across Europe. 📅 Expression of Interest deadline: 10 September 2026 🔗 loom.ly/climfrw #ERDERA #RareDiseases

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ERDERA @erdera.bsky.social · 14/07/2026

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

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ERDERA @erdera.bsky.social · 09/07/2026

🎯 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: loom.ly/Bkq9-_E 👉 Find out more: loom.ly/Nnydn-Y

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ERDERA @erdera.bsky.social · 08/07/2026

📣 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: loom.ly/hpvjx6Q #ERDERA

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ERDERA @erdera.bsky.social · 02/07/2026

🧩 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🔗 loom.ly/Br-vMRA

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ERDERA @erdera.bsky.social · 01/07/2026

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

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ERDERA @erdera.bsky.social · 24/06/2026

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

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ERDERA @erdera.bsky.social · 19/06/2026

🧬 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: loom.ly/Ht_R_Ag #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 17/06/2026

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: loom.ly/Zey54D0 #ERDERA #RareDiseases

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ERDERA @erdera.bsky.social · 11/06/2026

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

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ERDERA @erdera.bsky.social · 09/06/2026

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: loom.ly/B6eOnrw #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 05/06/2026

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

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ERDERA @erdera.bsky.social · 03/06/2026

🚀 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 👉 loom.ly/NxMGydc

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ERDERA @erdera.bsky.social · 03/06/2026

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

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ERDERA @erdera.bsky.social · 26/05/2026

👉 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: loom.ly/mH7fD24

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ERDERA @erdera.bsky.social · 21/05/2026

🚀 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: loom.ly/mH7fD24

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ERDERA @erdera.bsky.social · 19/05/2026

🗞️ 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: loom.ly/0GE3oew #EUResearch #Innovation

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ERDERA @erdera.bsky.social · 14/05/2026

📣 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: loom.ly/eZk0EsA

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ERDERA @erdera.bsky.social · 13/05/2026

📍 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: loom.ly/wjYYzdc #ERDERA #RareDisease

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ERDERA @erdera.bsky.social · 06/05/2026

🎓 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: loom.ly/mFHgMVI #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 05/05/2026

💡 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: loom.ly/FWzBQpg #RareDiseases

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ERDERA @erdera.bsky.social · 30/04/2026

🧬 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: loom.ly/k2ugfLw

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ERDERA @erdera.bsky.social · 29/04/2026

🧬 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

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ERDERA @erdera.bsky.social · 29/04/2026

📣 Early Career Researchers in rare diseases: a unique opportunity is open! REMEDi4ALL is offering a week-long, hands-on training on drug repurposing. Work in teams to design real-world solutions for rare neurodevelopmental disorders. 🗓️ Apply by Fri 8 May: loom.ly/kPnZjHM

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ERDERA @erdera.bsky.social · 28/04/2026

⏳ Not long to go! Daria Julkowska, ERDERA Scientific Coordinator, will be on stage in Boston at the World Orphan Drug Congress USA. 🎤 Session: “Ready to Run: Building Clinical Research Networks for Rare Disease Trials” - Moderator: Yann Le Cam 👉 Find out more: loom.ly/ilxeQfk

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ERDERA @erdera.bsky.social · 22/04/2026

Next week ERDERA co‑organises Where Diagnosis Becomes Hope for #UndiagnosedDay — a clinician‑led meeting on phenotype‑driven diagnosis and live cases. 📋 Explore the agenda: loom.ly/DbXzw0E 👉 Read more: loom.ly/kmU2JoY #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 17/04/2026

📣 Two online courses are offering direct interaction with specialists in rare disease research. 📅 7 April–15 May: Health Data Ethics & Regulatory Frameworks 📅 27 April–12 June: From Lab to Clinic: Translational Research 🔗 Find out more and register: loom.ly/oPGm0FY #ERDERA

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ERDERA @erdera.bsky.social · 16/04/2026

📬 Missed the ERDERA newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here 👉 loom.ly/7VjkRXs 📩 Don’t miss the next issue, subscribe now: loom.ly/TFRXEBY #ERDERA #RareDiseases

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ERDERA @erdera.bsky.social · 15/04/2026

⏳ 2 weeks to go: Join Undiagnosed Day 2026 in Gdańsk! 🗓️ On 30 April 2026 we will bring together experts and stakeholders to explore approaches to phenotyping and diagnosis in undiagnosed conditions. 🔗 Discover the agenda and strong line-up of speakers, and register now: loom.ly/DbXzw0E

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ERDERA @erdera.bsky.social · 14/04/2026

Patients are the glue holding the whole system together—without them, it simply wouldn’t exist. 👉 ERDERA speaks with Bojana Mirosavljevic, advocate behind Zoya’s Law in Serbia, on why patient voices must shape research & policy from day one. 🔗 Read more: loom.ly/vxcS4lo

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ERDERA @erdera.bsky.social · 09/04/2026

💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases? 🔎 Learn more: loom.ly/pjOwax0 #ATMPs #AdvancedTherapies #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 08/04/2026

How is Bulgaria advancing rare disease policy in line with Europe? ERDERA speaks with Prof. Radka Kaneva and Dr Petia Stratieva of the National Mirror Group. 👉 Read the full interview: loom.ly/Cv6fEqU #RareDiseases #ERDERA

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ERDERA @erdera.bsky.social · 07/04/2026

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ERDERA @erdera.bsky.social · 01/04/2026

🔬 How do we improve diagnosis for people with undiagnosed conditions? 📅 30 April | #UndiagnosedDay 2026 🌟 Expert & lived‑experience panellists 👉 View the agenda and register: loom.ly/DbXzw0E #RareDiseases #Diagnosis #HealthPolicy

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ERDERA @erdera.bsky.social · 27/03/2026

📍Last week, ERDERA joined the TETECOU Research & Innovation Day. 🎤 ERDERA Project Manager Başak Uysal highlighted how coordination, data sharing & cross‑stakeholder collaboration can accelerate rare disease research across Europe. #RareDiseases

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ERDERA @erdera.bsky.social · 25/03/2026

🌍 European Reference Networks (#ERNs) connect rare disease experts across Europe. Within #ERDERA, ERNs help bring clinicians, researchers & patients together to share knowledge, advance research and improve care where it’s needed most. Expertise, connected. 💙 #RareDiseases

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ERDERA @erdera.bsky.social · 23/03/2026

📣 Registrations are now open for Undiagnosed Day 2026! On 30 April, join experts in Gdańsk for a two-day, clinician-led meeting focused on phenotyping, diagnosis, and collaboration in undiagnosed rare conditions. 🔗 Find out more about this event: loom.ly/kmU2JoY #ERDERA #RareDisease

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