Tag: rare diseases

Call for Members : 2023 IRDiRC Task Forces

IRDiRC launches the Call for Members for the four new Task Forces of the 2023 Roadmap. Check out the newly approved Task Forces: Funding Models to Support the Spectrum of Rare Disease Research and Development The overall objective of this Task Force is to identify how different types of funders make decisions about when to […]

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Orphadata Science granted Global Core Biodata Resource status

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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European Union (EU) Health Summit – Rare Diseases Moonshot launch

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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Fondazione Telethon participates in European AGORA Consortium

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 Joint CA-SC: Interview with Dr. Christina Waters

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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