The International Rare Disease Consortium (IRDiRC) proudly supports the World Health Assembly (WHA) resolution on Rare Diseases. This is a crucial step towards addressing global disparities in care, research, and treatment for people living with rare diseases. Read the Position Statement here: Under the banner of “Health for All”, this resolution has the potential to elevate the visibility of […]
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AFM-Téléthon is launching its 2025 calls for proposals to support international research on neuromuscular disorders and rare genetic diseases. These calls are open to both French and international teams, offering funding opportunities for: ? Fundamental research and physiopathology projects.? Development of innovative therapeutic approaches.? Projects aimed at improving patient care and quality of life measures. […]
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New funding opportunity from the US National Institutes of Health (NIH) – PAR-25-122: Pilot Projects Investigating Understudied Proteins Associated with Rare Diseases (R03 Clinical Trial Not Allowed) The purpose of this notice of funding opportunity (NOFO) is to solicit applications for pilot projects to elucidate a role for understudied proteins in rare disease. Awards will support […]
Read MoreA new IRDiRC publication, “Fostering International Interoperability of Clinical Research Networks to Tackle Undiagnosed and Under-Researched Rare Diseases” is now available. This publication highlights the outcomes of a 2022 global meeting hosted by the International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD), which convened key stakeholders to discuss strengthening Clinical […]
Read More“The State-of-the-Art of N-of-1 Therapies and the IRDiRC N-of-1 Development Roadmap” is now published in Nature Reviews Drug Discovery. This exciting review explores the emerging field of N-of-1 genetic therapies, specifically designed for individuals with rare diseases caused by unique genetic variants. This pioneering approach represents a major step toward tailored treatments for ultra-rare conditions. The publication covers: […]
Read MoreIRDiRC’s Diagnostic Scientific Committee (DSC) plays a critical role in identifying and addressing current and future bottlenecks to rare disease gene discovery and diagnosis. As we work towards improving rare disease diagnosis globally, the DSC is currently seeking to expand its membership by welcoming new rare disease diagnostic experts for a one-time-renewable 3-year term on the DSC.Prioritization […]
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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 […]
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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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