The Rare Diseases University (RDU) is a physician-oriented, interactive, digital Medical Education program. It was designed to address the urgent need for better patient diagnosis and care for patients living with rare diseases around the world.The content is developed with the assistance of a faculty of doctors working in the field of rare diseases, and […]
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Rare Diseases International (RDI) and the Permanent Mission of Spain to the United Nations in New York are organizing the hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” on Thursday, 21 September, 2023, from 13:00 to 14:30 EST. The event is co-organized […]
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The Global Research on Impact of Dermatological Diseases (GRIDD) project is a global initiative focused on demonstrating the impact of skin conditions on patients’ lives. Its purpose is to gather worldwide data on dermatological diseases directly from those affected. The heart of GRIDD lies in the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a […]
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The Orphan Disease Center (ODC) is offering 39 research opportunities focusing on 31 different rare diseases. The program provides a one-year grant to support research related to a rare disease represented in the 2023 Million Dollar Bike Ride. Number of awards and dollar amounts vary per disease based on fundraising totals by each disease team. […]
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“Rare on air” is a series of monthly podcasts developed by EURORDIS showcasing different interviews with people who live with a rare diseases, advocates and experts on rare disease policy. The podcast explores the unique experiences, challenges and successes of people from the rare disease community, and investigates how we can build a better world […]
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IRDiRC is delighted to share the manuscript “How to START? Four pillars to optimally begin your orphan drug development“, developed by the members of the IRDiRC Task Force “Orphan Drug Development Guidebook (ODDG)” together with the members of the Therapies Scientific Committee (TSC). The paper proposes a checklist for orphan drugs named START – a […]
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Don’t miss out the European Haemophilia Consortium (EHC) Conference that will take place this year on 6-8 October, 2023, in Zagreb, Croatia, where IRDiRC Interdisciplinary Scientific Committee (ISC) Vice Chair, Marc Dooms (University Hospitals Leuven, Belgium), will present at the European Rare and Inhibitor Network (ERIN) session: “Basket trails – changes that we need”. Check […]
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Rare disease research presents unique challenges due to the small size of the populations of people living with these conditions. Collecting and curating large study cohorts in rare diseases presents a real problem, which can limit understanding of the clinical spectrum of disease. The SANOFI Rare Disease Registries represent more than 30 years of real-world […]
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IRDiRC is delighted to present you Karla Ruiz de Castilla, PACC member representative of the Iberoamerican Alliance for Rare Diseases (ALIBER). Karla is also the President of ESPERANTRA, a non-profit organization founded with the purpose of contributing to the reduction of mortality from cancer, chronic and rare diseases, with a strong advocacy focus on equal […]
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The Rare Disease (RD) Moonshot steering group has just published its recommendations for research funders and health research players from the industry and public sector on research needs that can be best addressed by public-private collaborations to optimise clinical trials in small populations. The RD Moonshot was set up to boost public private collaborations in the […]
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