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 […]
Read MoreThe 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 […]
Read MoreIRDiRC 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 […]
Read More22 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 […]
Read MoreIRDiRC 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 […]
Read MoreGlobal 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 […]
Read MoreEURORDIS 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 […]
Read MoreAs 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 […]
Read MoreLondon, UK – July 2022: The RDNN Board of Trustees and Management is delighted to announce the recent registration of RDNN as a registered UK charity. This is an important […]
Read MoreWe are proud to announce that the commentary on 10 years of progress and challenges of IRDiRC that was previously published in the prestigious journal Nature Reviews Drug Discovery is […]
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