The in-person phase of the Open Academy x ERDERA School “Navigating rare disease research: data, ethics, and AI in Europe” took place on 14 and 15 September 2026 in Barcelona. This initiative, promoted by EURORDIS within ERDERA, offers patient advocates comprehensive, rare-disease specific training programmes. This year, the focus was on data management, ethical considerations and the role of artificial intelligence in rare disease research. The two days in Barcelona represented the final stage of a broader training programme, launched in the form of a series of online webinars between March and June. These webinars were designed to equip patient representatives with the knowledge and skills needed to engage in informed dialogue with researchers and decision-makers regarding the changes brought about by data use and new technologies.

Fondazione Gianni Benzi took part in the initiative through its researcher Annalisa Landi, who gave the presentation entitled “What’s changing in AI use in clinical trials: Ethics, Informed Consent and Assent”. In her presentation, Annalisa Landi shared insights on the impact of artificial intelligence on clinical trials, with a specific focus on the ethics challenges and the implications for informed consent and for children’s assent. These are particularly sensitive issues in rare diseases research.

In Annalisa Landi’s account of the experience, what stood out above all else was the spirit of the initiative: a space designed not to speak to patients, but with patients. In this space,  patient advocates were able to gain the practical tools needed to play an active role in the rare disease research community. This is precisely the aspect that the Foundation brings with it from Barcelona, and which it will continue to nurture as part of its work within ERDERA.