Today, 28th of February, Fondazione Telethon (Italy) launched a Press Release to announce the agreement between Fondazione Telethon and Orchard Therapeutics, under which the foundation will work to make gene […]
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As part of our commitment in advancing initiatives related to rare diseases, IRDiRC is a proud partner at the 2024 World Orphan Drug Congress USA. This will be a defining […]
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The International Niemann-Pick Disease Registry (INPDR) announced a new collaboration with Sanofi, by giving controlled access to anonymized registry information via INPDR’s research “Gateway” platform. This collaboration will provide Sanofi […]
Read MoreWe are excited to announce that IRDiRC is now officially on LinkedIn! Get connected at: https://www.linkedin.com/company/international-rare-diseases-research-consortium-irdirc/about/
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Join the Canadian Organization for Rare Disorders (CORD) in celebrating the most impactful Rare Disease Day! This year’s edition marks the Anniversary of the announcement of Canada’s first National Rare […]
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Rare Disease Day is celebrated on the last day of February every year and is a special day for rare disease patients, researchers, and advocates. There are over 300 million people […]
Read MoreIRDiRC is delighted to co-host, together with Hope for Rare Foundation and Fudan University, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine […]
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The Committee for Orphan Medicinal Products (COMP) organized their Plenary Meeting last week (13-15 February), that was chaired by Regulatory Scientific Committee (RSC) Vice Chair, Violeta Stoyanova-Beninska, and Armando Magrelli. […]
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Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. […]
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A roundtable of EU and national policymakers, industry experts and patients will gather together to discuss the best approach to define unmet medical needs and Belgium’s multi-criteria approach. Around 36 […]
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