How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases? On behalf of Rare Diseases International, member of IRDiRC Patient Advocates Constituent Committee (PACC), we are pleased to share a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing […]
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What could healthcare look like in 2035 – if we act with the urgency that rare diseases demand? At DIA Europe 2026 panel session in Rotterdam (Netherlands), chaired and convened by Estelle Michael (UCB), IRDiRC members helped set the scene for a discussion on a future healthcare ecosystem, and why time matters. During the discussion, […]
Read MoreOn Rare Disease Day 2026, International Rare Diseases Research Consortium reaffirms its unwavering commitment to advancing research for the 300 million people and families living with rare diseases worldwide. With more than 65 member organizations — including research funders, companies, patient advocacy groups, and scientific leaders — IRDiRC continues to catalyse global progress through collaboration, innovation, and […]
Read MoreIRDiRC 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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The International Rare Diseases Research Consortium is launching a call for experts to support four new activities. 1. Towards responsible and equitable implementation of Digital Twins in Rare Disease Research and Care: a landscape and gap analysis. More details on the experts’ profiles: here 2. Models of Care for Care Coordination. More details on the experts’ profiles: […]
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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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