IRDiRC @irdirc
#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat irdirc.org Paris, France Joined April 2015-
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🌟 Patient Partnership Webinar Series 🌟 Join EURORDIS-Rare Diseases Europe for “Transition in Healthcare: Turning recommendations into practice” and explore how ERN recommendations can drive effective transition to adult care. 📅 30 June & 1 July 🔗eurordis.org/patient-partne…
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Ahead of #NewbornScreeningDay (28 June), IRDiRC welcomes the WHO report on birth defects & newborn screening—a major step toward earlier diagnosis and better lives. 👉Learn more: iris.who.int/items/1626e442… #RareDisease #NewbornScreening #IRDiRC #WHO
🌟 Welcoming 4 new members to the Regulatory Scientific Committee (RSC)! Together, we’ll advance regulatory science, strengthen collaboration, and accelerate innovation for people living with rare diseases. 👉Learn more: irdirc.org/rsc/ #RegulatoryScience #IRDiRC
🌟 Highlights from #WODCUSA 2026 🇺🇸 IRDiRC was delighted to contribute to discussions advancing rare disease R&D through global collaboration. Thank you to our constituent and task force members for their presentations and panel contributions. 👏 📸 Highlights below.
📢 Event Report Available! 🌍 The 2nd International Conference on Clinical Research Networks (#CRNs) united the global rare disease community to advance clinical research, with focus on LMICs. Read the report & discover key insights! rarediseasesinternational.org/wp-content/upl… #RareDiseases
🎥 Earlier this year, members of IRDiRC’s 7 committees gathered in Sofia 🇧🇬 to advance collaboration in rare disease research. Discussions focused on patient engagement, regulatory science, orphan drugs, emerging technologies & National Mirror Groups. 🎞️ youtube.com/watch?v=re1kYN…
🌟IRDiRC is excited to join #WODCUSA 2026 in Boston! From N-of-1 therapies to sustainable genetic medicine and bridging diagnostics to care, we're helping drive key conversations shaping the future of rare disease research. See you there! #RareDiseases #IRDiRC
🚨 ERDERA Clinical Trial Call 2026 pre‑announcement is live Planning to apply? Start preparing now 👉 loom.ly/x0LNqMY 📅 Launch: 1 July 2026 🎓 Webinar (6 July): loom.ly/Zey54D0 🔁 Share with your network #ERDERA #RareDiseases #ClinicalTrials
📣 Sign up for #RDSAConnect today! Created by Rare Diseases South Africa, this patient-first registry helps ensure rare disease communities are seen, heard, and counted. 👉Join here: raregistry.org.za/login #RareRegistry #RareDiseaseAwareness
📣 Rare diseases affect 300–400M people globally, yet 95% lack treatments. Our new publication calls for urgent global action and a Rare Disease Preparedness Roadmap inspired by COVID-19 lessons. 🖇️Read more: oaepublish.com/articles/rdodj… #RareDiseases
🌟 Innovative financing models can help close gaps in rare disease diagnosis, treatment & care. Join the #RDI webinar on practical examples & global case studies. 🗓 18 June 2026 | ⏰ 14:00 CEST 👉events.teams.microsoft.com/event/521e6060… #RareDiseases #RDI
🚀 IRDiRC is joining #WODCUSA 2026 to drive conversations on N-of-1 therapies, sustainable genetic treatments, preventative medicines, and bridging diagnostics to care for rare diseases. 💡terrapinn.com/conference/wor…
🌟 Join the new EU4Health webinar series on paediatric & orphan devices! First session: “Planning development using the GAITS framework”. 📅 2 June | 17:00 CET. Free registration 👉events.zoom.us/ev/AozHMBgdHs1… #OrphanDevices #EU4Health
📣 Join ERDERA’s Diagnostic Research Workstream webinar with Holm Graessner! Learn how data sharing, advanced diagnostic pipelines & multi-omics innovation are accelerating rare disease diagnosis. 👉 Register: erdera.org/event/webinar-… #RareDiseases #ERDERA
📣 Rare disease innovation must go beyond drugs 💡 Our latest publication explores how orphan medical devices & digital technologies can improve care for rare & pediatric populations 🌍👶🤝 🔗link.springer.com/article/10.118… #RareDiseases #MedTech
🌟 Registration is live for the Global Genes RARE Drug Development Symposium in Boston! 🇺🇸 Join leaders in research, policy, advocacy & clinical development to advance rare disease innovation and collaboration. 📩 Register here: globalgenes.org/rdds-2026/ #RareDisease
IRDiRC will join the EnprEMA & ACT EU workshop on paediatric clinical trials at the European Medicines Agency in Amsterdam on 12 May 2026. Together, stakeholders will advance collaboration for innovative, patient-centred research for children. 🔗ema.europa.eu/en/events/enpr…
⏳ 6 days left to apply! The IRDiRC TSC is looking for experts in rare diseases, digital health, modelling, and regulatory science. Don’t miss your chance to shape global collaboration. 📅 Deadline: 11 May 2026 📩 [email protected] 💡irdirc.org/call-for-new-m…
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