As part of the Horizon Europe project RealiseD, a short survey is being conducted to better understand how clinical sites identify, approach, and enrol patients with rare diseases. Investigators, study nurses, trial coordinators, patients and their representatives and all professionals involved in rare-disease studies are invited to take part until 28 January 2026. Estimated time for completion: 15–20 minutes. Survey […]
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The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce that Cerebrum DAO has joined the Funders Constituent Committee (FCC). Cerebrum DAO is an organization focused on advancing research and innovation at the intersection of neuroscience, artificial intelligence, and decentralized technologies, with an emphasis on building open and collaborative frameworks to accelerate brain science and translational discovery. […]
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We are pleased to share that earlier this December, ERDERA opened its 2026 Joint Transnational Call on “Resolving unsolved cases in rare genetic and non genetic diseases”. Interested multinational research teams can now access the call documents, set up a consortium and prepare their pre-proposal in the electronic submission system. Key dates:– Pre-proposal deadline: 12 February […]
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IRDiRC’s Patient Advocacy Constituent Committee member, EURORDIS-Rare Diseases Europe is organizing a new edition of the European Conference on Rare Diseases & Orphan Products (ECRD), the largest patient-led policy-shaping event on rare diseases in Europe. Taking place five years after Rare2030 and midway to the 2028 World Health Organization Global Plan target, ECRD 2026 will bring Europe’s […]
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A new IRDiRC feature article published in Drug Discovery Today provides a comprehensive assessment of non-oncology orphan drug development, focusing on productivity and the probability of success for therapies targeting rare diseases outside of cancer. The article, titled “Non-oncology orphan drug development: Productivity and probability of success, highlights several important trends: While rare diseases collectively affect hundreds of millions of […]
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A global community of clinicians, patient leaders, regulators and researchers met in Heidelberg (Germany) and online for the second International Conference on Clinical Research Networks (CRNs), organised by the European Rare Diseases Research Alliance (ERDERA), Rare Diseases International (RDI) and the International Rare Diseases Research Consortium (IRDiRC). CRNs are structured collaborations of expert sites, laboratories, […]
Read MoreIRDiRC is pleased to announce that COMBINEDBrain, represented by Terry Jo Bichell (CEO), has joined the IRDiRC Patient Advocacy Constituent Committee (PACC). The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders by pooling efforts, studies, and data. […]
Read MoreThe International Rare Diseases Research Consortium Diagnostics Scientific Committee (DSC) has created a Survey on Regulation, Accreditation, and Quality Assessment of Genetic Laboratories. This survey has been developed to map the global regulatory and quality landscape for genetic testing laboratories. The results will help identify best practices, gaps, and opportunities to harmonize standards for diagnostic laboratories worldwide. The survey is available at the following link: Survey […]
Read MoreWe are pleased to announce that Stefano Benvenuti, Head of Public Affairs at Fondazione Telethon (Italy), and Naveed Aziz, Vice President of Research and Innovation at Genome Canada (Canada), have been elected as the Chair and Vice Chair, respectively, of the Funders Constituent Committee (FCC). About the FCC The IRDiRC Funders Constituent Committee’s principal mission is to ensure high-level coordination […]
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Want to stay informed about the latest breakthroughs, global initiatives, and collaborative efforts shaping the future of rare disease research? Join the International Rare Diseases Research Consortium (IRDiRC) community by subscribing to our newsletter. Why Subscribe? By signing up, you’ll receive: Who Is It For? Researchers, clinicians, industry partners, patient advocates, regulators, policymakers, and anyone committed to […]
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