Applications for this course are closed.
This training has been developed in response to the growing need for advocates to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe. Its primary objective is to equip participants with the knowledge and skills to effectively engage with and influence data-driven research initiatives in the rare disease community.
ORGANIZED BY:
EURORDIS Open Academy Schools, operating under ERDERA (co‑funded by EURORDIS and ERDERA).
LAUNCH DATE:
Applications open 5 January 2026 (call for applications runs 5 January–2 February 2026). Programme pre‑training kick‑off: March 2026.
Hybrid training programme “Navigating Rare Disease Research: Data, Ethics, and AI in Europe” for 20 participants (rare disease patient advocates in Europe and PhD/up to two years post‑PhD researchers). Online learning runs March–July 2026, followed by in‑person sessions on 14–15 September 2026 in Barcelona. Focuses on data management, ethical/regulatory considerations, data protection (including GDPR), and AI in rare disease research, with an emphasis on enabling advocates to engage as equal partners.
Flyer link: Download the training flyer (PDF).