EURORDIS-Rare Diseases Europe is calling on people living with a rare or undiagnosed condition, as well as their families, to register for the Rare Barometer panel and take part in […]
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ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed under ERDERA’s predecessors, EJPRD and the […]
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The FDA’s Office of Orphan Products Development (OOPD) is excited to announce a funding opportunity for fiscal year 2026 aimed at advancing natural history studies in rare diseases and conditions: […]
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Global Genes, IRDiRC Patient Advocacy Constituent Committee member organizes its 2025 RARE Drug Development Symposium, being held on 3-4 September, 2025 in Boston (MA, USA). This hands-on, expert-led event is […]
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The Wiedemann-Steiner Syndrome Foundation, in partnership with the Orphan Disease Center University of Pennsylvania, is proud to announce three new 2-year research grants to support scientific advancement in Wiedemann-Steiner Syndrome […]
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IRDiRC Diagnostic Scientific Committee (DSC) unites clinicians and specialists in genetics, genomics, bioinformatics, molecular diagnostics, and biochemistry to help reduce the diagnostic odyssey for the patients living with rare diseases. DSC […]
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The World Orphan Drug Congress Europe is the largest and most established event globally for orphan drugs and rare diseases. With over 150 speakers already confirmed, WODC Europe connects global […]
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IRDiRC is proud to announce the publication of the latest article in Therapeutic Advances in Rare Disease: “From Roadmap to a Sustainable End-to-End Individualized Therapy Pathway.” This publication builds on the […]
Read MoreIRDiRC has four Scientific Committees: Diagnostics, Therapies, Interdisciplinary, Regulatory. The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts working on rare disease (RD) data sharing, ontologies, natural history, biobanks, […]
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IRDiRC was represented at the International Conference of China by Dr. David Pearce, IRDiRC Chair, and Dr. Gareth Baynam (Interdisciplinary Scientific Committee Chair). The meeting was organized by CHARD, and […]
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