Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis, treatment, and care remains out of reach for millions of people living with a […]
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Medical devices for rare diseases are becoming increasingly important as healthcare innovation expands beyond orphan drugs and biologics. Emerging technologies such as digital remote monitoring systems are creating new opportunities […]
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The Foundation for Rare Diseases has developed a series of three online courses with European and international partners to better understand innovative therapies, health data, and translational research in the […]
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We are pleased to share a new publication produced by the IRDiRC Functional Analysis Task Force, highlighting the growing impact of multi-omics in advancing rare disease research and precision medicine. […]
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Undiagnosed Day 2026 is a two‑day, clinician‑led meeting in Gdansk (Poland) bringing together specialist clinicians, clinical geneticists and invited experts to support phenotype‑led diagnosis through live case discussion, shared clinical […]
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IRDiRC Patient Advocates Constituent Committee (PACC) member, Genetic Alliance, is pleased to announce that 9 new clinical sites and 1 new laboratory joined the iHope program network, further strengthening the […]
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The landscape of medical research is shifting: rare disease patient advocates are no longer just participants, they are the architects of discovery. Driven by an urgent need for life-saving treatments, […]
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The third Hope for Rare Science Conference will be held in Shanghai, China from June 25th to 27th, 2026. The conference is hosted by Hope for Rare Foundation, with National […]
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The European Rare Disease Research Alliance (ERDERA) has re-opened its survey to better understand where the rare disease research community most needs external consultancy support with the goal to turn […]
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The CSNK2A1 Foundation Pilot Grant Program, developed in collaboration with the Orphan Disease Center University of Pennsylvania, member of the IRDiRC Funders Constituent Committee (FCC), will support one investigator-initiated research […]
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