The US National Institutes of Health (NIH) announces a new collaboratory research opportunity on Newborn Screening by Whole Genome Sequencing. Eligible organisations are invited to submit their application before Friday, […]
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IRDiRC is proud to have gathered experts, researchers, patient advocates, and industry leaders at its annual 2-days Consortium Assembly – Scientific Committees Meeting on 3-4 March, 2025, in Brussels, Belgium. […]
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For the Rare Disease Day 2025, the European Commission has prepared a social media campaign on X and Facebook running from 10 to 25 February highlighting rare diseases projects ERICA […]
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A Day to Raise Awareness & Drive Action Rare diseases affect over 300 million people worldwide, yet many patients still face delayed diagnoses, limited treatment options, and a lack of […]
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The RealiseD project, funded under the Innovative Health Initiative (IHI), emerged in direct response to the strategic priorities set by the Rare Disease Moonshot. The Moonshot’s Clinical Trials Research Needs Recommendations provided a structured […]
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We are pleased to share the webinar organized by the IRDiRC member, Rare Diseases International (RDI) – “From Grassroots to Global: Growing Momentum towards the WHA Resolution on Rare Diseases”. […]
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We are thrilled to announce the launch of the European Joint Programme on Rare Diseases (EJP RD) survey aimed at assessing the knowledge and impact of Rare Diseases research (data) […]
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Exciting news from the IRDiRC PACC member EURORDIS! The Rare Barometer survey on the impact of rare diseases on daily life is now open. Open worldwide and available in 25 […]
Read More“Earlier, faster and more accurate diagnosis” We are delighted to share the results of the the recent Rare Barometer survey, developed by the IRDiRC PACC member organization EURORDIS-Rare Diseases Europe, […]
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A new publication about incorporating Spinal Muscular Atrophy (SMA) in newborn screening programs across Europe is now available in the Rare Disease and Orphan Drugs Journal. The paper highlights how […]
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