IRDiRC

💡New IRDiRC paper from Telehealth Task Force! Telehealth is transforming rare disease care 🌍💻—from faster diagnosis to better access, research & global education. 📄journals.sagepub.com/doi/10.1177/26… 🔗irdirc.org/telehealth-tas… #RareDiseases #Telehealth

Two impactful days at the IRDiRC Consortium Assembly and Scientific Committees Meeting in Sofia! 🌍🧬 Grateful to all participants for the inspiring discussions and collaboration, and a special thanks to our Bulgarian hosts for the warm hospitality 🇧🇬✨

🌟 IRDiRC at the NAB Meeting in Sofia 🇧🇬 Great to join the ERDERA-organized NAB, highlighting the value of strong collaboration between national stakeholders and the EC. IRDiRC Chair Dr. David Pearce joined the “Added Value of NMGs” panel, chaired by Victoria Hedley.

🚨 IRDiRC Regulatory Scientific Committee has 3 openings! We’re seeking experts in rare disease & regulatory science. 🗓 Apply by March 31, 2026 📩 scientific.secretariat[at]irdirc.org 💡More information: irdirc.org/nomination-cal…

📮 ECRD Call for Poster Abstracts – Submit by 6 March! Researchers, clinicians, patient advocates & stakeholders — your work matters! Share your insights and gain visibility within the rare disease community. 👉 More info: rare-diseases.eu/posters/ #RareDiseases #EURORDIS #ECRD

🌍 On Rare Disease Day 2026, IRDiRC reaffirms its commitment to advance research for 300M people living with rare diseases worldwide. Learn more about our work: irdirc.org/rare-disease-d… 💙#RareDiseaseDay #IRDiRC #RareDiseaseResearch

📍Paris, just before #RareDiseaseDay! The Task Force on Stigma is tackling a critical issue for #RareDisease patients: stigma – affecting 1 in 3 PLWRD and limiting access to care. 💡 Collaborating on solutions, patient-driven research & tech for inclusion.

🌎 Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity 🧬 On behalf of IRDiRC, we’re thrilled to see rare diseases as a global priority. 💡 Better data can improve outcomes for 300M+ people. 🔬 Read the paper: reports.weforum.org/docs/WEF_Makin…

🌟New public webinar from RDI 🌟 On behalf of Rare Diseases International (RDI), IRDiRC PACC member, we’re announcing a public webinar on how rare disease centers operate across health systems. 🗓 18 March 2026 ⏰ 14:00–15:00 CET Insights from global case studies + panel

🌟 Exciting news! Shirlene Badger has been elected Vice-Chair of the CCC at IRDiRC! 🎉 She leads Global Patient Advocacy at Illumina Inc., advancing patient-centered genomics and rare disease research. 👏 #Leadership #RareDiseases #CCC #PatientAdvocacy

🏆 Join the 15th Black Pearl Awards by EURORDIS online next Tuesday, 24 February! ✨ 🕙 10:00 CET – Virtual platform opens 🎉 20:00–22:30 CET – Live Awards Ceremony Be part of this global celebration from anywhere 🌍 🔗 Register: eurordis.org/black-pearl-aw… #EURORDISAwards2026 💜

🌍 The IRDiRC CCC welcomes PacBio as its newest member, represented by Nina Gonzaludo. PacBio is a leader in long-read sequencing technologies, enabling more comprehensive and accurate genomic insights. 🔗Learn more: pacb.com

⏳ Just 3 days left to apply for the IRDiRC Call for Experts! ⏳ IRDiRC is recruiting experts for 4 new activities. ✅ Monthly 1-hour calls, one 2-day workshop, ongoing collaboration, and co-authorship opportunities. 👉 Read one-pagers & Apply: irdirc.org/call-for-exper…

🌟 iHope, a program of @GeneticAlliance (IRDiRC PACC member), offers no-cost genome & exome sequencing for kids with suspected genetic conditions. 🏆 3,000+ tested, 6th pro bono lab added, sites grew 20→25, HOPE study launched! #RareDisease #Genomics #ChildHealth #iHope

🏥 5 days left to apply! Join the IRDiRC Task Force on Models of Care for Care Coordination, launched by the Interdisciplinary Scientific Committee. 📆 Apply by 20 Feb 2026 🔗irdirc.org/call-experts-m… #IRDiRC #RareDiseases #CareCoordination #HealthPolicy #CallForExperts

📢 IRDiRC leading critical conversations at World Orphan Drug Congress USA 2026 🇺🇸 🗓️ 9–11 June 2026 📍 Thomas M. Menino Convention & Exhibition Center, Boston 👉Full agenda: terrapinn.com/conference/wor… #RareDisease #IRDiRC #WODCUSA

⏳ Call for experts: 8 days left to apply! IRDiRC’s TSC is seeking global experts to advance digital biomarkers & endpoints in rare disease therapeutic development. 📆 Deadline: 20 Feb 2026 👉Apply now: irdirc.org/call-experts-d… #IRDiRC #DigitalBiomarkers #RareDiseases

📊 Only 9 days left to apply! IRDiRC CCC is seeking global experts for a Task Force on Optimizing Data Sources & Registries to accelerate rare disease treatment development. Apply by 20 Feb 2026: irdirc.org/call-experts-d… #IRDiRC #RareDiseases #RWE #CallForExperts

📢 Funding Opportunity The Orphan Disease Center (ODC) at the University of Pennsylvania, in collaboration with the @LoulouFoundation, announces the 2026 CDKL5 Program of Excellence Pilot Grant Program. 🔗 Learn more & apply: orphandiseasecenter.med.upenn.edu/grants/cdkl5-p… #CDKL5 #RareDisease

🔔 RealiseD_ihi Project — Survey deadline extended! Now open until 15 February Clinicians, researchers, industry, regulators & patient reps — your experience matters. 👉 Take the survey: lnkd.in/eCT82ENc ⏱️ 15–20 mins #RareDiseases #ClinicalTrials #RealiseD