Our Patient Advisory Group (PAG) was set up in November 2025. Prior to that we had a small informal group to provide patient perspective for external requests primarily – pharmaceutical companies. 

Our FSHD UK PAG has 9 members, vary in age and across the spectrum of our FSHD journey. They have a schedule of educational sessions from the expertise of our clinical team. Their main goal is to provide an improved understanding of desired patient benefits and priorities related to FSHD.