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 […]
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The 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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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 […]
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IRDiRC Chair and members, Dr. David Pearce, Dr. Gareth Baynam, Helene Cederroth and Mikk Cederroth have co-authored a new publication on the importance of the Undiagnosed Hackathon in finding new […]
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Cerebrum DAO is a community-powered network organization dedicated to sourcing, funding, and translating research that advances solutions to extend healthy brain lifespan. Their current research priorities include: Cerebrum DAO offers project […]
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IRDiRC 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, […]
Read MoreWe are delighted to announce that IRDiRC Chair, Dr. David Pearce, will be speaking at the World Orphan Drug Congress USA this April, in Boston, MA, USA. The World Orphan […]
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