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 […]
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 […]
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. […]
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 […]
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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 […]
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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 […]
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 […]
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, […]
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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 & […]
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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 […]
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