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 reasoning and practical exchange. The event is organised by the European Rare Diseases Research Alliance (ERDERA), the Wilhelm Foundation, the Medical University of Gdansk (GUMed), and the University Clinical […]
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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 practical insights from researchers and stakeholders into targeted consultancy services that help projects overcome common bottlenecks and generate robust, timely evidence. Launched in September 2024 […]
Read MoreIRDiRC 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, this event aims to support phenotype-led diagnosis through live case discussions, shared clinical reasoning, and practical exchange. Inspired by the collaborative spirit of international Undiagnosed […]
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A global community of clinicians, patient leaders, regulators and researchers met in Heidelberg (Germany) and online for the second International Conference on Clinical Research Networks (CRNs), organised by the European Rare Diseases Research Alliance (ERDERA), Rare Diseases International (RDI) and the International Rare Diseases Research Consortium (IRDiRC). CRNs are structured collaborations of expert sites, laboratories, […]
Read MoreIRDiRC members Marjon Pasmooij (Head of the Science Department at the Dutch Medicines Evaluation Board, and member of Therapies Scientific Committee), Mary Wang (Director Patient Engagement at Genespire, and member of Interdisciplinary Scientific Committee) and scientific project manager Alexandra Tataru participated in the Multi-Stakeholder Workshop on Prioritization of Rare Diseases for ATMP Development, organized by […]
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The 2nd International Conference on Clinical Research Networks for Rare Diseases, organised by ERDERA, Rare Diseases International and IRDiRC, will take place in hybrid format from the 9-10 of December, 2025 in Heidelberg, Germany. Under the theme “Mobilising the Global Rare Disease Clinical Research Ecosystem”, this global event will gather experts and stakeholders from across […]
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