IRDiRC 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 […]
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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 MoreRegulatory sandboxes are emerging as a powerful tool to accelerate innovation in healthcare, and their potential in the rare disease space is especially promising as they offer flexible, structured environments […]
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IRDiRC is pleased to share a new publication “What Matters Ethically About How the UDN Has Changed Since Its Inception”, recently published in AMA Journal of Ethics. For individuals living […]
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IRDiRC announces publication of a new manuscript, developed as part of the International Rare Disease Research Consortium (IRDiRC) N-of-1 Task Force: “Applying the IRDiRC N-of-1 Therapy Task Force Eligibility Criteria for Individualised […]
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The 2nd International Conference on Clinical Research Networks for Rare Diseases will take place on 9–10 December 2025 in Heidelberg, Germany, with full hybrid access for participants worldwide. This edition features a […]
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The International Rare Diseases Research Consortium (IRDiRC) is pleased to participate in this year’s World Orphan Drug Congress Europe, taking place from 27–29 October 2025 in Amsterdam, Netherlands. We warmly invite all attendees to visit […]
Read MoreProfessor Sally Ann Lynch, chair of IRDiRC Diagnostics Scientific Committee (DSC), will be chairing the upcoming ERN ITHACA webinar on “Genetics and unique populations: The Case of the Finnish, Roma […]
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