On 15 October, EURORDIS-Rare Diseases Europe launched “A European Blueprint for Rare Diseases”, setting out the rare disease community’s proposals for the priorities and implementation of a future EU Action […]
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IRDiRC is pleased to announce the release of a new publication in the Orphanet Journal of Rare Diseases, “Unveiling the depth of the knowledge gap in the Universe of Rare […]
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On behalf of Rare Diseases International (RDI), member of IRDiRC Patient Advocates Constituent Committee, we are delighted to announce the opening of the RDI Youth Leadership Programme 2027–2028. Over 2 […]
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Rare diseases often face significant challenges in drug discovery and development, including limited patient populations, fragmented data, and high research costs. A recent editorial in Drug Discovery Today highlights the potential of […]
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The International Rare Diseases Research Consortium announces two new members for its Diagnostics Scientific Committee (DSC). The Diagnostics Scientific Committee brings together international experts in clinical genetics, genomics, bioinformatics, molecular […]
Read MoreThe International Rare Diseases Research Consortium (IRDiRC) Working Group on the Engagement of Young People Living with Rare Diseases in Therapy Development has published a perspective article in Frontiers in Pediatrics entitled “Engaging Children, Adolescents and Young Adults Living with Rare Diseases as Research Partners: Practical Considerations for Meaningful […]
Read MoreThe International Rare Diseases Research Consortium is pleased to welcome to its Interdisciplinary Scientific Committee (ISC) two new members: Elizabeth Hart – Associate Director of Rare Disease (Acting), Center for […]
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The rare disease community will convene in Amsterdam this October for the World Orphan Drug Congress Europe 2026, bringing together stakeholders from across the orphan drug and rare disease ecosystem. The […]
Read MoreIRDiRC is pleased to announce the appointment of 3 new members to the Therapies Scientific Committee (TSC): The Therapies Scientific Committee brings together international experts committed to advancing therapeutic development […]
Read MoreIRDiRC is delighted to announce the appointment of new members to the Regulatory Scientific Committee (RSC). Established in 2022, the Regulatory Scientific Committee (RSC) was created to address regulatory gaps […]
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