ERDERA
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.
- 🌟 The Black Pearl Awards highlight outstanding leadership, collaboration, and innovation across the rare disease community, celebrating those whose work is driving meaningful change in Europe and beyond. 🔗 Join the event in person or online! loom.ly/jQKWOfY #EURORDIS #RareDiseases
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- The 2nd International CRN Conference highlighted how Clinical Research Networks accelerate research and trials for rare diseases. 🎬 Watch the video for participant insights! loom.ly/Y9EVYAQ #RareDiseases #CRNs #ClinicalResearch
- Advancing the rare brain disease ecosystem 🧠 On 24 Feb 2026 #ERDERA will join a panel discussion on how recent EU policy and regulatory developments can accelerate research, innovation and access for rare brain diseases. 👉 Register to join: loom.ly/LsbiQCg
- 🌍 IRDiRC call for experts: Join the new 2026 roadmap activities! Join 4 Task Forces/WGs on Digital Twins, Care Models, Data/Registries, Digital Biomarkers. Worldwide experts: researchers, clinicians, patients, regulators and the list goes on! 🔗 More: loom.ly/w_8lAvI #IRDiRC #RareDiseases
- 💡How is #ERDERA shaping the future of the #RareDisease research ecosystem? Recently, we invited members to reflect on key achievements, the partnership’s significance, and their hopes for the future. Watch the video loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
- Progress in rare diseases depends on shared knowledge 🔬 As ECRD 2026 partners, ERDERA invites you to submit your abstract and help shape future rare disease care 🤝 🔗 loom.ly/pZztyoc #ECRD2026 #EURORDIS #RareDiseases
- Did you know that over 70% of rare diseases are genetic?🧬 Understanding our genetic origins is key to developing better treatments💡 Read #ERDERA’s Knowledge Pill on #DNA, genetic mutations, epigenetics, and inheritance—explained clearly and accessibly 🔗 loom.ly/HfZkiLw
- ⏳ 20 days left to apply! Pre-proposal deadline for the ERDERA 2026 Joint Transnational Call: 📅 12 Feb 2026 | ⏰ 14:00 CET Theme: Resolving unsolved cases in rare genetic and non-genetic diseases. 👉 Access the full details and criteria: loom.ly/YzdmNGY #ERDERA #RareDiseases #ResearchFunding
- 📅 Save the date! #iDR26 will take place on 12–13 May 2026 in Brussels. Join the leading global event on drug repurposing to explore patient-centred innovation from AI and rare diseases to policy and funding. Early Bird tickets out now ➡️ loom.ly/OLXLDNE #RareDiseases #ERDERA
- Apply to ERDERA's Networking Support Scheme! 💡Funding for events that connect experts on #RareDiseases & #RareCancer 🌍 Boosts inclusion of underrepresented countries 📅 Apply anytime – second deadline: 7 April 2026 🔗 loom.ly/scOFS9w #ERDERA #ResearchFunding
- 🌍 Save the date for #ECRD2026, a leading patient-led policy event on rare diseases | 3–4 June | Prague & online This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases” 🔗 Info: loom.ly/kNumRPA
- 🚀 Start 2026 with fresh insights! Join #RealiseD’s webinar series (13 Jan–10 Feb) on innovative clinical trials in rare diseases. Learn key design principles, regulatory strategies, and patient-centric approaches from leading experts. Register now👇 loom.ly/E2cmGmM #RareDiseases
- 🔬 AFM-Telethon has launched its 2026 call for proposals, supporting scientific and medical research in neuromuscular disorders! 📌 Full call documents and info: loom.ly/Qrnre_M 🔗 More: loom.ly/VM5jLH8 Share within your networks. 🤝🔁 #RareDiseases
- Rare disease research works best when it is connected, inclusive and patient-centred. Discover how #EURORDIS is shaping #ERDERA — from national alignment to advanced therapies. 👉 Read the article: loom.ly/BApi_EQ #RareDiseases #HealthResearch
- The ERDERA coordination team met in Barcelona to align on our shared mission, strengthen collaboration and streamline action for year two 🚀 This was key to keeping a partnership of 180+ partners and 3,000+ stakeholders well aligned and moving towards its objectives 🌍 #ERDERA
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- ERDERA's Joint Transnational Call 2025 results are out 🎉 18 projects have been selected representing ~€29 million in funding for preclinical research on rare disease therapies🔬 👉 Discover the selected projects and how they adress the call's core aims: loom.ly/BAShwKw #ERDERA #RareDisease
- Three days in Brussels to help advance the European Declaration on Rare and Complex Diseases 👉 ERDERA Coordinator Daria Julkowska joined the HLM Rare 2025 in Brussels. Read the full recap of this important event 🔗 loom.ly/JeB52Fc #RareDiseases #ERDERA #HLMRare
- Daria Julkowska joined the High-Level Meeting on a European #RareDisease R&I ecosystem 🧬 EU policymakers, industry, patient advocates & researchers came together to push for real actions that boost innovation across the rare disease community💡 #RareDiseases💙 #ERDERA #EUHealth
- That’s a wrap on the 2nd International CRN Conference for Rare Diseases! 🎉Thank you to all who joined onsite and online — your contributions strengthen collaboration and evidence generation across the rare disease community 🤝 Highlights here: loom.ly/XQCqGOg #ERDERA #RareDiseases
- 📢 ERDERA’s 2026 Joint Transnational Call is OPEN! The call “Resolving unsolved cases in rare genetic and non-genetic diseases” supports global research efforts to speed up diagnosis & improve outcomes. 🔗All the info is now available: loom.ly/YzdmNGY #ERDERA #RareDisease
- Day 1 of the #CRN Conference is a wrap! 🎉 From global efforts in RWE and data collection 🌍📊 to new approaches in diagnostics & clinical research 🔬, today delivered strong scientific insights for rare disease networks. More discussions coming today—stay tuned! ✨ #ERDERA
- 🚀 The 2nd International Clinical Research Networks Conference for #RareDiseases opened with an energising plenary session featuring David Pearce (#IRDiRC), Alexandra Heumber Perry (#RDI), and Daria Julkowska (#ERDERA). Excited for the discussions ahead! 📣 Stay tuned for more insights!
- 🚀 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... 📝 Survey: loom.ly/4PY2_TY 🔄 Share with your networks! #ERDERA
- 📅 Save the date! #ECRD 2026 will take place on 3–4 June in Prague, under the theme “Rare diseases in a changing & competitive Europe: shaping policies to address unmet needs”. ✨ Find out more and register 👉 loom.ly/kNumRPA #RareDisease #OprhanDrugs #ECRD #Research #PatientVoice
- 🚨 Last week to register for the 2nd International Conference on #CRNs! Global experts, fresh insights, inspiring sessions… don’t miss this standout event! 👉 Check speakers & session themes and register before it closes: loom.ly/1fhf8zI #RareDiseases #ClinicalResearch #ERDERA
- ERDERA joined regional leaders in human genetics at the 15th Balkan Congress & 3rd Alpe-Adria Meeting in Bled. 🧬 Key topics: rare disease diagnostics, long-read sequencing, OGM, & AI-supported variant interpretation. Read more 👉 loom.ly/v4U19e0 #ERDERA #RareDiseases
- 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: loom.ly/1fhf8zI #RareDiseases #ClinicalResearch
- 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!
- 💜 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: loom.ly/ii7_OJg #eurordis
- 📣 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: lnkd.in/erMJCeGn 🔸Register to the webinar: loom.ly/d45a8o8 #ERDERA
- 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: loom.ly/1fhf8zI 👉 Register: loom.ly/yceyPYw #ERDERA
- 🌍 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: loom.ly/mvCfTg0 #ERDERA
- 🚀 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: loom.ly/IbXYIfw 🔄 Share with your networks!
- 🌍 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: loom.ly/mvCfTg0 #ERDERA
- 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: loom.ly/yceyPYw 👉 Find out more: loom.ly/1fhf8zI
- 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: 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👉 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 👉 loom.ly/a8O3Yos #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: 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: 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: loom.ly/j4k2yns 🔗 About the speakers: 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: loom.ly/YzdmNGY 🔗 More info: 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: loom.ly/j4k2yns
