I have a scientific background in neuroscience and pharmacology, a competence that has been precious also for my work at Fondazione Telethon, where I started in 2001 with the management of the peer review process for the selection of grant applications. I developed and managed a special call to support clinical research on neuromuscular disorders (NMD), a program which has been instrumental for the development of a solid clinical network of centres in Italy that share knowledge and standards of care and inspired the NEMO clinics, based on patient-centred care (Ambrosini et al. OJRD, 2021,16:408). I coordinate the Italian NMD patient registry, which is based on a strong governance which includes Telethon and several patient organisations and is involving the majority of the NMD clinical centres in Italy (Ambrosini et al. OJRD, 2018, 13:176). Overall, through my experience in Telethon I gained knowledge about the principles, needs and challenges of healthcare and medical research and data management, also outside the NMD field (Forloni et al. Prion, 2022, 16:1, 66-77).Since 2018, about half of my time is dedicated to coordinating activities at the scientific office of Fondazione AriSLA, whose funders and current members include Telethon. AriSLA is a funding agency fully dedicated to support research on amyotrophic lateral sclerosis (ALS) in Italy (Front. Res. Metr. Anal., 04 August 2023).My activity has led me to interact closely with researchers, clinicians and patient organizations active in the field of rare diseases, and to be involved in several strategic initiatives in Italy and abroad.