IRDiRC@irdirc

#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat

 Paris, France
irdirc.org
Joined April 2015
684 Photos and videos
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IRDiRC@irdirc
Aug 27
⭐ IRDiRC at World Orphan Drug Congress Europe 2026! Join 1,800+ rare disease leaders in Amsterdam, 27–28 Oct. 🎟️ Early Bird: save 20% by 4 Sept: terrapinn.com/conference/wor… 📣 Poster Zone applications are open! #IRDiRC #WODC2026
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📣 RDI Webinar: Innovative Financing for Rare Diseases. Join the final webinar session, as experts explore how financing solutions can move from concept to implementation. 🗓️ 29 Sept | 14:00 CEST 👉events.teams.microsoft.com/e…
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📢 Final reminder! Poster Zone applications for #WODCEurope 2026 close Monday, 28 Sept. Showcase your research to the global rare disease community. 🧬 Apply: terrapinn.com/conference/wor… 📍 Amsterdam | 26–28 Oct
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🚀 Registrations are open for #REACTCongress2027! Join the rare disease community in Budapest, 10–12 March 2027, for 3 days of science, collaboration & innovation. 🔗 react-congress.org/ #RareDiseases #RAREvolution #REACTcongress
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🌟 Rare disease patient group leaders: make your voice heard! Share your experience in @RareBeacon Rare Insights Study and help shape evidence that can support funding, impact and service delivery across the UK. Take the survey by 19 October: 👉 rarebeacon.org/rare-insights…
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🌟 Welcome to IRDiRC’s new Interdisciplinary Scientific Committee members! Elizabeth Hart 🇺🇸 (FDA) and Teguh Haryo Sasongko 🇲🇾 (IMU University) bring valuable expertise and global perspectives to rare disease research. 🤝 💡Learn more: irdirc.org/isc/ #IRDiRC
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🔎 Rare Disease Day 2027 launches soon! Join EURORDIS’ campaign webinars on 19 Oct (4pm CEST) or 20 Oct (9am CEST) to discover the concept, heroes & resources. 🌍 💡More information: eurordis.org/rare-disease-da… #RareDiseaseDay2027
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🎙️The SCGE Workshop will take place on 29 Sept 2026, exploring clinical delivery, regulation & payment models for individualized genome editing therapies. Join the discussion on enabling sustainable patient access. 📩 Register now: scge.mcw.edu/scge-workshop/
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🌐 New event: EMA & HMA workshop on real-world data in Duchenne muscular dystrophy, 25 Sept 2026. Shekhar Natarajan, Chair of IRDiRC’s Therapies Scientific Committee, will join stakeholders in person. #DMD #RWD #RareDiseases
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🌟 PETAL Consortium brings together 100+ investigators across 20+ international sites to advance research in peripheral T-cell lymphoma (PTCL), fostering collaboration, data sharing, and discovery to better understand PTCL. 🔬🌎 💡Learn more: petalconsortium.org/
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🌏 Expanding Rare Disease Care Across the Pilbara Six months ago, the Rare Care Centre in Western Australia commenced its Pilbara Hub clinics, bringing cross-sector rare disease care coordination to communities up to 1,500 kilometres from Perth, Australia.📍
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🎙️ 10 Minutes With Rhiannon Walls: The Rare Patient Passport Sarah Baker, CEO of @camraredisease, shares how this practical tool brings medical information together, reduces burden and supports person-centred care. 🎥eurordis.org/10-minutes-with…
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🧬 AI + Biology + Patients = New hope for rare diseases 🚀 @biohub Rare As One Network is opening its 4th cycle this fall, empowering patient-led research and accelerating the path to better treatments. 💡Learn more: biohub.org/blog/ai-powered-b… #AI #RareDisease
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🌟 Discover the Rare Awareness Rare Education (RARE) Portal—a trusted Australian resource for verified rare disease information, education & support, funded by the Australian Government. 💡Learn more: vimeo.com/1191038076?share=c… #RareDiseases #RAREPortal
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🚨 Funding Opportunity for Rare Disease Researchers! The MAST Genes Research Foundation & Orphan Disease Center invite LOIs for research on MAST gene disorders. 👉Apply & learn more: orphandiseasecenter.med.upen… #RareDisease #ResearchFunding #IRDiRC
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📢 IRDiRC is seeking 2 new members for DSC! We’re looking for: 🔸 A rare disease diagnostic scientist 🔸 A patient advocate focused on access to diagnosis Help advance rare disease diagnosis worldwide. Apply by 1 September 2026. 🔗 irdirc.org/call-for-new-memb… #IRDiRC #DSC
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🌟 Every newborn deserves an equal start. We support the EURORDIS call for an EU multi-stakeholder Newborn Screening Group to reduce inequalities, enable earlier diagnosis, and improve outcomes for children with rare diseases. 👉🏼 eurordis.org/publications/po…
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📣 New funding opportunity for rare disease research! Anthropic has launched a grant program for academic researchers and small biotechs exploring AI to accelerate discovery, patient data analysis & preclinical innovation. 👉Learn more: anthropic.com/news/rare-dise…

AI for Science rare disease research grants

Researchers can apply for up to $50,000 in Claude credits over six months to study rare genetic diseases as part of Anthropic's AI for Science program.

anthropic.com
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📣 Welcome to the new IRDiRC Therapies Scientific Committee members! We are delighted to welcome Cynthia Rothblum-Oviatt, Nancy Casanova & Sara Elgott. Together, we’ll advance collaboration to accelerate rare disease therapies. 💡Learn more: irdirc.org/tsc/
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🚨 The ERDERA Clinical Trial Call is now open! Funding is available for multinational Phase I–II rare disease clinical trials. 👉Apply now and join the webinar on 6 July 2026. Learn more: erdera.org/news/erdera-launc… #ERDERA #RareDiseases #ClinicalTrials
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