Facioscapulohumeral muscular dystrophy (FSHD) is a disease of skeletal muscle, causing progressive weakening and loss of muscle in both adults and children. It can rob people of their ability to walk, talk, smile, blink or even eat.
It is a genetic disease which parents can pass down to their children, and often runs in families.
There is currently no effective treatment or cure. However, there are therapies and support available which can help people maintain a good quality of life.
There are several government agencies and charities that offer information and practical support for Australians with FSHD.
Although there is no cure for FSHD, there are therapies and support which can help you maintain the good quality of life you deserve.
Cure FSHD is the patient-led Australian registry for people living with FSHD. Through the Cure FSHD app, you can collate your genetic information, patient questionnaires and other FSHD data to receive your ‘clinical trial passport’. This passport validates that you are ‘trial ready’, meaning that when a clinical trial is set to run in your area, you will be notified and offered the opportunity to take part.
Joining this patient registry also gives you the ability to store, manage, and access your own health information, keeping it readily accessible for you to use in discussion with your healthcare team.
To join the registry, download the Cure FSHD app today.
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