This report is a public version of an Ethnographic study realised for Roche, in partnership with APN and SPEDNM. It was published after a Conference created to share its main insights and bring different stakeholders together to exchange experiences and drive change.

The challenge of this research was to find out how to provide help and support beyond medication to people with a Rare Neuromuscular disease and their safety network. The outcome was an Ethnographic Study with relevant targets (patients and their families, specialists and medical professionals) to understand their context and the impacts of a Rare Neuromuscular disease in the personal, social, medical and support system (services) dimensions of patients and their families.