IRDiRC

📣 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 📩 scientific.secretariat@irdirc.org 💡irdirc.org/call-for-new-m…

🌟 Undiagnosed Day 2026 in Gdańsk 🇵🇱 IRDiRC was represented by Chair Dr. Dave Pearce and CCC Vice-Chair Shirlene Badger, joining global experts to advance diagnosis through collaboration. 🔗erdera.org/news/undiagnos… #UndiagnosedDay2026 #RareDiseases #IRDiRC

📣 Global Nursing Education for Rare Diseases Position Paper Released The GNNRD position paper outlines actions to strengthen nursing education & improve care worldwide.👩‍⚕️🩺🌍 👉 Read now: gnnrd.org/position-papers #UndiagnosedDisease #Nurses #Education #GNNRD

📚 Three online courses to strengthen your knowledge of rare diseases🧬 The Foundation for Rare Diseases, with European and international partners, has launched three online courses on RDs. Available on FutureLearn 👉 futurelearn.com/partners/frenc…

🌟 A European Parliament event on rare diseases, organised by @eurordis with MEP Nicolás González Casares, will take place on 23 April 2026 in Brussels and online. 👉More information: eurordis.org/european-parli…

IRDiRC Therapies Scientific Committee (TSC) is recruiting new members! 🌍 Experts in #RareDiseases, simulation & modelling, digital health, or regulatory science are encouraged to apply. 📅 Deadline: 11 May 2026 📩 scientific.secretariat@irdirc.org 💡irdirc.org/call-for-new-m…

📣 New IRDiRC publication: “Translating multi-omics into healthcare” 🧬 Multi-omics + computational methods advance rare disease research & precision medicine, improving diagnostics & treatments. 🤝 Open access: link.springer.com/article/10.118…

📣 @GeneticAlliance shares milestones from the #iHope program! 9 new clinical sites + 1 lab joined the network, and Dr. Jennifer Troyer joins the team. 3,000+ children sequenced and 1,500+ reached diagnoses for rare disease families. 🔗ihopegenetichealth.org

🚀 RARE Drug Development Symposium 2026 “Accelerating Rare Disease Progress: Aligning Advocates, Science & Industry” 🗓 Sept 9–11, 2026 📍 Boston, MA, USA Join advocates, scientists & industry leaders to accelerate rare disease research. 🔗globalgenes.org/rdds-2026/

🧬 Undiagnosed Day 2026 – Where diagnosis becomes hope On 30 April in Gdańsk, ERDERA and partners host a key event on collaboration & technology in rare diseases, following a clinician round table on 29 April. 📅 29–30 Apr 2026 🔗 erdera.org/event/undiagno… #UndiagnosedDay

🌟 Join the 3rd Hope for Rare Science Conference in Shanghai, China (June 25–27, 2026)! Hosted by Hope for Rare Foundation with global partners, the event features 80+ speakers from 10+ countries, 22 parallel sessions, and satellite meetings. Register: hrsc.org.cn

📣 Help pinpoint where consultancy makes the biggest difference in RD research. European Rare Diseases Research Alliance (ERDERA) has re-opened its survey to identify where researchers need external consultancy support most. 📝 Share your input: forms.cloud.microsoft/pages/response…

🔊 New Funding Opportunity: The CSNK2A1 Foundation Pilot Grant Program with the Orphan Disease Center at the University of Pennsylvania (FCC member) offers $50K for OCNDS research. 📅 LOI due Apr 17, 2026 Apply: orphandiseasecenter.med.upenn.edu/grants/csnk2a1 #RareDisease #OCNDS #ResearchFunding

📣 Register now for Undiagnosed Day 2026 (29–30 April) A clinician-led meeting on phenotype-led diagnosis, featuring live case discussions and multidisciplinary exchange. 📍Gdansk, Poland + online 🔗erdera.org/event/undiagno…

💡New publication in The Lancet, co-authored by Dr. Baynam (ISC) - "Language in rare disease: a call for systemic and empathetic action." 🔗 Read the publication: thelancet.com/action/showPdf… #RareDiseases #GlobalHealth

🌟 Webinar Series from RDI: Innovative Financing for Rare Diseases 🌟 How can financing innovation improve equitable access to diagnosis, treatment, and care for people living with rare diseases? 🗓️ 23 April | 2–3 PM CEST 📲 Register: lnkd.in/e2NnrDCS