On 15 December 2022, Orphadata Science was awarded Global Core Biodata Resource status, being one of the first batch of resource to be designated by the Global Biodata Coalition. Orphadata Science (which includes Orphanet‘s scientific knowledge base) was one of the 12 European resources to have been selected following a two-step application process evaluated by […]
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AFM Téléthon (France) launches a scientific call for proposals for 2023, open both to French and foreign teams. The aim is to support: Fundamental Research and Physiopathology of Diseases of the Neuromuscular System Development of Innovative Therapeutic Approaches for Rare Genetic Diseases More information available here (PDF) Along with this call, AFM Téléthon also launches […]
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Join us on 8th December for the European Health Summit that will take place in Brussels (Belgium) and online to find out more about our journey towards a Rare Disease Moonshot. Online registration is open here: https://lnkd.in/eCGr3ZmX IRDiRC Scientific Secretariat Coordinator, Daria Julkowska, will be part of the panel “Building a sustainable R&D ecosystem for […]
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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 on September, 23rd 2022 with a focus on fostering alternative solutions to make life-saving gene therapies available for children born with rare genetic diseases. According […]
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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 of IRDiRC’s Companies Constituent Committee. The report, to which IRDiRC members Takeya Adachi, Gareth Baynam and Hugh Dawkins contribute as an expert panel, takes a […]
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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 focus a thematic issue on the questions regarding the research and development of orphan devices and medical technologies that are being developed for Rare Diseases […]
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London, 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 milestone as they strive forward on their mission to provide a network of specialist nurse support for every person with a rare disease. RDNN has […]
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With the occasion of the IRDiRC Joint Consortium Assembly – Scientific Committees Meeting, held on June 1st-2nd, 2022, in Paris, France, IRDiRC launched a series of interviews with its members on the importance of strong international collaboration in the rare disease community. We launch today the first video of the series with Dr. Christina Waters, […]
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