A global community of clinicians, patient leaders, regulators and researchers met in Heidelberg (Germany) and online for the second International Conference on Clinical Research Networks (CRNs), organised by the European Rare Diseases Research Alliance (ERDERA), Rare Diseases International (RDI) and the International Rare Diseases Research Consortium (IRDiRC). CRNs are structured collaborations of expert sites, laboratories, […]
Read MoreIRDiRC is pleased to announce that COMBINEDBrain, represented by Terry Jo Bichell (CEO), has joined the IRDiRC Patient Advocacy Constituent Committee (PACC). The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders by pooling efforts, studies, and data. […]
Read MoreThe International Rare Diseases Research Consortium Diagnostics Scientific Committee (DSC) has created a Survey on Regulation, Accreditation, and Quality Assessment of Genetic Laboratories. This survey has been developed to map the global regulatory and quality landscape for genetic testing laboratories. The results will help identify best practices, gaps, and opportunities to harmonize standards for diagnostic laboratories worldwide. The survey is available at the following link: Survey […]
Read MoreWe are pleased to announce that Stefano Benvenuti, Head of Public Affairs at Fondazione Telethon (Italy), and Naveed Aziz, Vice President of Research and Innovation at Genome Canada (Canada), have been elected as the Chair and Vice Chair, respectively, of the Funders Constituent Committee (FCC). About the FCC The IRDiRC Funders Constituent Committee’s principal mission is to ensure high-level coordination […]
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Want to stay informed about the latest breakthroughs, global initiatives, and collaborative efforts shaping the future of rare disease research? Join the International Rare Diseases Research Consortium (IRDiRC) community by subscribing to our newsletter. Why Subscribe? By signing up, you’ll receive: Who Is It For? Researchers, clinicians, industry partners, patient advocates, regulators, policymakers, and anyone committed to […]
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A new analysis of orphan drug approvals across six global regulatory regions highlights significant delays in access to innovative therapies for people living with rare diseases. The study, conducted by the International Rare Diseases Research Consortium (IRDiRC) Regulatory Science Committee (RSC), examined all new non-oncology orphan medicines approved between 2021 and 2022 and found substantial […]
Read MoreThe International Rare Diseases Research Consortium (IRDiRC) is pleased to announce the appointment of Shekhar Natarajan (Vice President, Head of EU and International Regulatory Affairs at Dyne Therapeutics, USA), as Chair, and Diana Kwast-Hoekstra (Executive Director at (Un)limited Forward!, Netherlands), as Vice Chair of the Therapies Scientific Committee (TSC). The TSC unites a diverse group of stakeholders from across the global […]
Read MoreWith less than one month to go, registrations are still open for the 2nd International Conference on Clinical Research Networks — a two‑day hybrid meeting designed to align global efforts on data, diagnostics and trials for rare diseases. The conference is organised by the European Rare Diseases Research Alliance (ERDERA), the International Rare Diseases Research Consortium (IRDiRC) […]
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Are you advancing research, shaping policy, or driving advocacy for people living with rare diseases? Share your work with Europe’s rare disease community at the European Conference on Rare Diseases & Orphan Products (ECRD 2026) — Europe’s largest, patient-led rare disease event organized by EURORDIS Rare Disease Europe, taking place on 3–4 June 2026 in Prague, Czech Republic. […]
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The World Orphan Drug Congress 2025 brought together leading voices in the rare disease community for 3 days of insight, collaboration, and forward-looking discussion. Representatives from the International Rare Diseases Research Consortium (IRDiRC) shared key perspectives on advancing research and improving access to therapies for people living with rare conditions. A highlight of the congress, which took place […]
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