High-quality data are essential for modern health research, and this is especially true in the field of rare diseases. Addressing this need, the FAIR Training Program 2025–2027 is a three-year educational cycle designed to equip participants with both theoretical knowledge and practical tools to apply FAIR approaches.

The first part will take place online from September 24 to 26, 2025, offering three afternoons of practical tools, inspiration, and interactive activities. The training is aimed at researchers, healthcare professionals, data stewards, funders, and representatives of patient organizations – in short, anyone seeking to maximize the potential of healthcare data. No prior experience with FAIR is required. The FAIR Training Program will continue in 2026 with practical online sessions and culminate in 2027 with an in-person training (location to be confirmed).

The first day explores the value of FAIR data and their benefits for rare disease research, presents case studies from European projects, and features lectures by leading experts, including Mark D. Wilkinson, the principal author of the FAIR principles. The second day focuses on FAIR principles, project management, and hands-on experience with FAIRification, complemented by an interactive game highlighting common challenges in data handling. The final day covers advanced tools and concepts, including semantic modeling, SPARQL querying, and legal and ethical considerations in working with health data, along with a forward-looking perspective on FAIR within the European Health Data Space.

Participants will gain a clear understanding of the value of FAIR data, along with the knowledge needed to design FAIRification processes and work with machine-readable data formats. In rare disease research, where every record is valuable, these skills enable more effective diagnosis, targeted treatment, and support robust research efforts.

The program is organized by ERDERA (European Rare Disease Research Alliance) together with its partners and is hosted by the World Duchenne Organization. Participation is free of charge, with registration open until September 12, 2025, here. More information about the event is available here.

Last updated on September 9, 2025