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 and Solve-RD. In addition, a new updated factsheet will be available starting 28th February, together with a new Carousel-visual “4 facts you should know about […]
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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 awareness. Rare Disease Day is a global movement that unites researchers, advocates, policy makers, and patients to push for progress. In 2025, initiatives across multiple continents are bringing […]
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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 foundation that helped shaping RealiseD’s objectives, methodologies, direction and expected outcomes. The origins of RealiseD can indeed be traced back to the EFPIA-EURORDIS Joint Statement on […]
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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”. This year’s Rare Disease Day theme “More than You Can Imagine” reminds us of the milestones we have achieved by working together as a global community — […]
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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) resources and tools developed within the project. As a member of the Rare Diseases research community, your input is invaluable. This survey will help in […]
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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 languages, from 10 July to 8 September. More information about the survey: Where can I find the survey and in how many languages is it […]
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, which shows that the average rare disease patient in Europe waits nearly five years for a diagnosis. Check out more details about this survey’s findings […]
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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 patient advocacy organizations represent a key partner in ensuring equitable and early diagnosis. ? Read the full publication here: https://lnkd.in/emYepUDX? More publications on Newborn Screening: […]
Read MoreThe European Commission has published a new Guidance on clinical evaluation of orphan medical devices on June 26th. Orphan devices are medical devices or their accessories, which are intended to be used for diseases or conditions affecting only a small number of individuals each year. Often, they are used to treat a rare disease or medical […]
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IRDiRC announces the launch of a new paper on “Newborn screening in Mexico and Latin America: present and future”, part of the Newborn Screening Initiative Real-World Applications and Technologies special edition, now fully available in the Rare Disease and Orphan Drugs Journal. “The first newborn screening program (NBS) to be implemented in Latin America was […]
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