IRDiRC

📣 Call for Experts – Join IRDiRC’s Interdisciplinary Scientific Committee ✅policy/public affairs/human rights ✅education or capacity building 📩 Apply by 27 July 2026 scientific.secretariat@irdirc.org 👉🏼 More info: irdirc.org/call-for-new-m… #RareDiseases #IRDiRC #ISC

🌟 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/p…

📣 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-la… #ERDERA #RareDiseases #ClinicalTrials

🌟 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…

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 👉@7b242a05-e2fe-4b06-b307-81c76e69db19" target="_blank" rel="nofollow noopener">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

#ECRD2026 is just around the corner! 🇪🇺🧬 Great to see multiple members of #IRDiRC confirming their onsite participation in Prague. 🤝 Looking forward to important discussions on rare disease policy, research, access to care, and collaboration across Europe and beyond.✨

📣 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