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 […]
Read MoreThe 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. […]
Read More“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 […]
Read MoreIRDiRC 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 […]
Read MoreDon’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 […]
Read MoreRare 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 […]
Read MoreIRDiRC 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 […]
Read MoreThe 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 […]
Read MoreInaugurated in 2012, China Rare Disease Summit has become the largest and the most comprehensive rare disease conference in China. The annual summit promotes open communications among multiple stakeholders, fosters collaboration, and makes significant contributions to policy advocacy in China. The largest and the most comprehensive rare disease conference in China The most robust platform […]
Read MoreIRDiRC proudly announces the publication of the manuscript “Targeting shared molecular etiologies to accelerate drug development for rare diseases“ online, today. The manuscript is published in the EMBO Molecular Medicine Journal and freely accessible online at the following link: https://www.embopress.org/doi/full/10.15252/emmm.202217159.
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