Rare disease BYOD

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Registries represent key resources for Rare Disease to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research. The "5th International Summer School on Rare Diseases and Orphan Drug Registries" aims to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) Rare Disease (RD) registries in compliance with IRDiRC and EU Recommendations. The Summer School is organized by the National Centre for Rare Diseases (ISS) in collaboration with Services and Centre for International Affairs (ISS), RD-Connect, Elixir, RD-Action, EURORDIS and endorsed by ICORD. The Summer School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology. The first part of the School (September, 18-20) will provide participants with useful tools and methodologies for establish a registry, the quality of the data collected and how a registry is turned into a FAIR resource. The second part (September 21-22) will be a hands-on experience (bring your own data), where the attendees work with FAIR data experts to make their data FAIR and linkable to other data that has been made FAIR before. More information on: [1]