IRDiRC is excited to share its latest interview featuring Maria Cavaller Belaubi (EURORDIS-Rare Diseases Europe, Spain), co-chair of the “Engagement of Young People Living with Rare Diseases in Therapy Development” Working Group. In this conversation, she offers thoughtful insight into why meaningful youth participation is essential in shaping healthcare systems that truly reflect patients’ needs. […]
Read MoreJust ahead of Rare Disease Day, the International Rare Diseases Research Consortium (IRDiRC) Task Force on Stigma and Rare Diseases convened a pivotal two-day workshop in Paris to tackle one of the most persistent challenges facing people living with rare diseases: stigma. Stigma contributes to inequality, marginalization, and reduced access to care — with profound consequences for […]
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IRDiRC is pleased to share that Shirlene Badger has been elected Vice-Chair of the International Rare Diseases Research Consortium’s Companies Constituent Committee (CCC). Shirlene leads Global Patient Advocacy at Illumina Inc., where she advances patient-centered genomics across rare and undiagnosed genetic disease, reproductive health, newborn screening, infectious disease, and oncology. A medical sociologist trained at […]
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The IRDiRC Companies Constituent Committee (CCC) is pleased to welcome PacBio as its newest member, represented by Nina Gonzaludo, Global Lead Human Genomics, based in the USA. PacBio is a global leader in long-read sequencing technologies, enabling more comprehensive and accurate genomic insights. These advances play a critical role in accelerating progress in rare disease research and improving diagnostic capabilities. […]
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The International Rare Diseases Research Consortium will be at the forefront of discussions at World Orphan Drug Congress USA 2026, highlighting innovations in rare disease research, personalized therapies, and sustainable approaches to genetic medicine. Attendees should not miss these pivotal sessions: 10 June, 11:30 – Where is N-of-1 Going? | Advanced Therapies – Fireside ChatModerated by Dr. David Pearce, […]
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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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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 […]
Read MoreA 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. […]
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