IRDiRC
@irdirc
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#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
Paris, France
Joined April 2015
✅ Wrapping up 2 inspiring days at the IRDiRC Fall Consortium Assembly in Paris! 🇫🇷 Global experts came together to shape the future of rare disease research, from drug repurposing to diagnostics & patient engagement. 🌍 #RareDiseases #IRDiRC #Research
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⭐️ New IRDiRC Publication ⭐️ 💡Regulatory sandboxes: A new frontier for rare disease therapies Flexible, structured spaces to safely test regulatory innovation for #RareDiseases. 🌍 Featured at the 2025 IRDiRC CA & SC meeting in Brussels. Read Now 📕 https://t.co/SrVhtPgZLW
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🔍New IRDiRC Paper: "What Matters Ethically About How the UDN Has Changed Since Its Inception"🧬 🌍 Emphasizing international collaboration + diagnostic equity 🎙️ Hear Dr. Dave Pearce on Ethics Talk: https://t.co/tVCLWtEitZ 📄 Read the article: https://t.co/lW8OOXvsVR
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📢 New publication from @irdirc A real-world application of the N-of-1 Task Force eligibility criteria using Duchenne muscular dystrophy (DMD) as a use case. 📄 https://t.co/JEszrFF268
#RareDisease #Nof1 #ASO #DMD
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📢 Register now! 🌟Join the 2nd International Conference on Clinical Research Networks for Rare Diseases🌟 🗓 9–10 Dec 2025 | 📍 Heidelberg + 🌍 Online A hands-on, action-driven, global event! 🔗 Registration: https://t.co/ptjfAtBm5X
#RD #ClinicalResearch #RDI #ERDERA
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📣 Heading to #WODCEurope in Amsterdam? 🔬 Visit the IRDiRC booth & join our members at key sessions on #RareDiseases, #GeneTherapy, #policy, #prevention & more! 🗓 Oct 27–29 📍 Agenda: https://t.co/bS2zFB9WWT
#OrphanDrugs #IRDiRC #DrugDevelopment #GlobalHealth
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📣 Applications are OPEN for the 2026 EURORDIS Open Academy in Barcelona! 📣 Be part of the next wave of patient advocates shaping research, regulation & policy. 🗓️ Apply by 17 Oct 2025 🔗 Info: https://t.co/TWXrJ5YN4g
#EURORDIS #ERDERA #OpenAcademy #RareDiseases
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🌟 The agenda for @ERDERA_org Open Session is LIVE! Join us as we celebrate ERDERA’s 1st anniversary with a dynamic online event for the #RareDisease community. 🗓️ Open to all — registration required! 📩 Register: https://t.co/kgadMixJ5k 🔗 Details: https://t.co/Hyjbm4v0CI
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🌟 Exciting News! 🌟 Prof. Sally Ann Lynch, Chair of IRDiRC’s DSC, will chair the upcoming ERN ITHACA webinar: 🧬 "Genetics and Unique Populations: The Case of the Finnish, Roma & Irish Travellers" 🗓️ 14 Oct 2025 🕓 5:00 PM CET 🔗 Register:
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🧬 Rare diseases affect 30M+ in Europe — most lack timely diagnosis or treatment. The #RareDiseaseMoonshot shows how rare diseases can drive 🇪🇺 #HealthInnovation & shape the EU Life Science Strategy. Read more:
sciencebusiness.net
Over 30 million people in Europe live with a rare disease. Most of them still lack access to accurate diagnosis or treatment options. These unmet needs, these “white spots”, are not fringe issues....
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💡News from #IRDiRC Funders Committee Member Fondazione Telethon A breakthrough from SR-Tiget uncovers the liver cells driving organ growth & advancing pediatric #GeneTherapy. 🔗 https://t.co/1wUqrHZcwe
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🌟Save the date – 2nd International Conference on Clinical Research Networks for Rare Diseases🌟 💡“Mobilising the Global Rare Disease Clinical Research Ecosystem” 🗓️9-10 December 2025 🌍Co-organized by @ERDERA_org, RDI & IRDiRC 📩Register now: https://t.co/EWDLvRpPar
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🎬 New animation & e-learning resource launched by @RareCareCentre + @SyneosHealth to help teachers better support children with rare diseases. 📽️ Watch now! https://t.co/2iUlDmUN7a
#RareDiseases #Awareness #Education
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📢 New publication on AI in rare disease research! Based on IRDiRC’s Oct 2023 workshop, a new AI Framework aims to transform diagnosis, treatment & QoL for RD patients. 🔗 Read more: https://t.co/Q1NgXhIqIH
#IRDiRC #RareDiseases #AI
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🌟 New publication alert! 🌟 "Undiagnosed Hackathons: Ending the diagnostic odyssey for individuals with rare disease" is now out — co-authored by IRDiRC members Dave Pearce, Helene Cederroth, Gareth Baynam & Mikk Cederroth. 👉Read the paper:
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📣 New FDA Grant Opportunity for Rare Disease Research! 📣 The FDA's Orphan Products Grants Program is now accepting applications for clinical trials addressing unmet needs in rare diseases. 🗓️ Deadline: Oct 21, 2025 🔗 Learn more: https://t.co/OY9kcrvbUP
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🚲 The Million Dollar Bike Ride 2025 Pilot Grant Program is open! 💡 The Orphan Disease Center is offering 1-year rare disease research grants. 📅 LOIs due Sept 19, 2025 – 8PM ET 🔗 Details: https://t.co/rNjp0kHxZQ
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📣 Save the Date now! The 14th UDNI Conference on Rare & Undiagnosed Diseases is happening in Rio de Janeiro 🇧🇷, Oct 28–31, 2025. 🌍 Global experts 🧬 Cutting-edge research 🤝 Interdisciplinary collaboration 🔗 Info: https://t.co/JEhmnFWAtI 📩 Register: https://t.co/ZHsfCuIN3h
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💡 New Funding Alert from @CerebrumDAO 💡 Cerebrum DAO funds cutting-edge brain health research — up to $200K/project (incl. overhead)! Apply now 👉 https://t.co/zFz8yyc7yc 📩 michele@cerebrumdao.com #FundingOpportunity #CerebrumDAO
cerebrumdao.com
A community-powered network organization that sources, funds, and translates neuroscience research to accelerate solutions that extend healthy brain lifespan.
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📢 ANR Generic Call for Proposals 2026 supporting 57 research themes 👩🔬 Supports young & senior researchers 🌍 National & international collaborations 📅 Open: July 21 | Close: Oct 14 🔗 Info: https://t.co/orzM1qm6v5
#AAPG2026 #ANR #ResearchFunding
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