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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We are pleased to announce a new IRDiRC publication, “Challenges and opportunities for the use of telehealth in rare disease diagnosis, treatment, research, and education: key opinion leader interviews”, produced […]
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IRDiRC is delighted to be represented by multiple members at the Undiagnosed Day 2026 taking place in Gdansk (Poland) and online. Bringing together specialist clinicians, clinical geneticists, and invited experts, […]
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How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases? On behalf of Rare Diseases International, member of IRDiRC Patient Advocates Constituent […]
Read MoreWhat could healthcare look like in 2035 – if we act with the urgency that rare diseases demand? At DIA Europe 2026 panel session in Rotterdam (Netherlands), chaired and convened […]
Read MoreOn Rare Disease Day 2026, International Rare Diseases Research Consortium reaffirms its unwavering commitment to advancing research for the 300 million people and families living with rare diseases worldwide. With more than […]
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