@irdirci
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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
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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…
📢 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
🚀 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
🌟 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…
🌟 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
🔎 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
🎙️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/
🌟 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/
🎙️ 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…
🧬 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
🌟 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
🚨 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
🌟 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…
📣 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…
📣 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/
🚨 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