EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2^nd edition of training was planned held from 9-13 March 2020 in Paris. The event was moved to Zoom and Claudia Finis from Germany represented the OIFE. The course covered topics including the history of genetics, diagnostics, new technologies in gene therapy and drug repurposing.