@erdera.bsky.social
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.
🌍 For #RareDiseaseDay, ERDERA joins the global movement to promote equity, visibility and progress for people living with rare diseases and their families. 💚 Find out how we turn #ResearchCollaboration into real impact👉 https://loom.ly/_JM9nYw #MoreThanYouCanImagine #ERDERA
18.02.2026 01:40 — 👍 1 🔁 0 💬 0 📌 0
Portrait of Professor Hélène Dollfus honored with the EURORDIS Black Pearl Scientific Award on a purple background.
In celebration of her outstanding contributions to rare genetic eye diseases and her deep commitment to the patient community, we are delighted to award the 2026 Black Pearl Scientific Award to Professor Hélène Dollfus. 🥼
Recognising excellence ⤵️
🔗 https://go.eurordis.org/BPA-2026
Thank you for sharing @cnag-eu.bsky.social 💙
17.02.2026 11:57 — 👍 1 🔁 0 💬 0 📌 0
📣 Daria Julkowska, #ERDERA Coordinator, will be attending the European Parliament on 24 February for “Make Rare Count – Driving EU Policy Action on Rare Diseases.” 🌍 Policymakers, patients, researchers & industry will discuss meaningful EU action on #RareDiseases.
16.02.2026 01:37 — 👍 0 🔁 0 💬 0 📌 0
🌍 What are national mirror groups & why do they matter in #RareDisease research? Victoria Hedley, Rare Disease Policy Manager at Newcastle Uni, explains their role in supporting collaboration & innovation 🎥 Watch the interview on YouTube to learn more: https://loom.ly/09gqMRM
#RareDiseases #ERDERA
🌟 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! https://loom.ly/jQKWOfY #EURORDIS #RareDiseases
06.02.2026 05:56 — 👍 1 🔁 0 💬 0 📌 0Looking forward to this!
05.02.2026 11:17 — 👍 0 🔁 0 💬 0 📌 0
📣 Open-access iPSC training | 6 March
EBiSC and ERDERA are joining forces to host a free, open-access training session on best practices for the use and sharing of iPSC lines.
Register here and join us to help strengthen iPSC research!
lnkd.in/extr-ExX
#iPSC #raredisease #stemcell #diseasemodelling
The 2nd International CRN Conference highlighted how Clinical Research Networks accelerate research and trials for rare diseases. 🎬 Watch the video for participant insights! https://loom.ly/Y9EVYAQ #RareDiseases #CRNs #ClinicalResearch
04.02.2026 06:14 — 👍 2 🔁 0 💬 0 📌 0
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: https://loom.ly/LsbiQCg
02.02.2026 05:56 — 👍 0 🔁 0 💬 0 📌 0
🌍 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: https://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 https://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 🤝 🔗 https://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 🔗 https://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: https://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 ➡️ https://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
🔗 https://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: https://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👇 https://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: https://loom.ly/Qrnre_M
🔗 More: https://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: https://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
17.12.2025 04:41 — 👍 3 🔁 0 💬 0 📌 0
🚀 RealiseD is launching a survey to identify what drives enrolment in #ClinicalTrials across rare & ultra‑rare conditions. Open to HCPs, academia, industry, regulators, sponsors & patient advocates!
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
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: https://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 🔗 https://loom.ly/JeB52Fc #RareDiseases #ERDERA #HLMRare
11.12.2025 09:45 — 👍 1 🔁 0 💬 0 📌 0
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
11.12.2025 00:51 — 👍 1 🔁 0 💬 0 📌 0That’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: https://loom.ly/XQCqGOg #ERDERA #RareDiseases
10.12.2025 08:07 — 👍 1 🔁 0 💬 0 📌 0
📢 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: https://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
10.12.2025 00:16 — 👍 0 🔁 0 💬 0 📌 0
🚀 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!
09.12.2025 06:41 — 👍 2 🔁 0 💬 0 📌 0
