Patients unite to power FSHD research through new national registry
Knowledge-focused
Recruiting now
BetterLife FSHD is a patient-driven registry and online platform for people with Facioscapulohumeral Muscular Dystrophy (FSHD). It aims to collect health and experience data from up to 5,000 participants through regular surveys to help researchers better understand the disease. T…
Sponsor: FSHD Society • Aim: Knowledge-focused
Last updated Mar 13, 2026 15:06 UTC