In the context of the IRDiRC Interview Series, Funders Constituent Committee member and Fondazione Telethon’s Head of Affairs Stefano Benvenuti’s interview is now available. “IRDiRC is a great opportunity for […]
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The recording of the Science/AAAS webinar on the subject “Knowledge is power: The urgent need to internationalize databases for rare disease patients” will be made available on September 29th at […]
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IRDiRC member organization Fondazione Telethon is delighted to share the press release of their participation in the European AGORA (Access to Gene therapies fOr RAre disease) Consortium. The AGORA Consortium was founded […]
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The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare […]
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IRDiRC is delighted to share the release of Connecting the dots: Embedding progress on rare disease into healthcare, an Economist Impact report sponsored by Takeda, a company that is part […]
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22 September 2022 – Paris, France – IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available […]
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IRDiRC Member Organization Rare Diseases International is delighted to announce their upcoming webinar on the use of the International Classification of Diseases 11th Revision (ICD -11) for rare diseases, which […]
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Global Genes is delighted to announce that they will soon be hosting their largest event of the year, the Patient Advocacy Summit. The 3-day event will take place from September […]
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EURORDIS is pleased to announce that nominations for the EURORDIS Black Pearl Awards are now open until September, 4th. The Awards are presented to patient advocates and organisations, policy makers, scientists, companies, and media in recognition […]
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As one of the outcomes of the MedTech for Rare Diseases Working Group led by IRDiRC members Anneliene Jonker and Marc Dooms, the Orphanet Journal of Rare Diseases has decided to […]
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