Having FSHD, this summarizes it in a simple way.
Despite being one of the most common forms of Muscular Dystrophy in adults and children, and causing whole of body, life long disability in thousands of Australians, Facioscapulohumeral Dystrophy is not well known and many within our patient community find it difficult to access a diagnosis, care and support. FSHD Global Research Foundation is advocating for our patient community, driving systemic improvement around diagnostics, clincial trial readiness and clinical care as Australia's peak body for FSHD. We target improved quality of life for people living with FSHD and work to fast-track therapies through our funded research, advocacy programs, industry partnerships and patient engagement services. Help us raise awareness for this cruel and relentless disease, and support our advocacy program by donating through your hands, heart, or wallet. #FSHD #clinicaltrialreadiness #advocacy