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National Neuromuscular organisations

When you’re living with a neuromuscular condition, there will be times you’ll have questions, need advice or wish there was someone to talk to. There are national organisations that provide information to help you find your way.

These national organisations support children and adults living with certain neuromuscular conditions and other rare diseases across Australia.

Charcot-Marie-Tooth Association Australia

The Charcot-Marie-Tooth Association Australia (CMTAA) supports people with CMT, their families and friends.

Postal Address: Building 22 Concord Hospital, Concord, NSW 2139

Phone: (02) 9767 5105


FSHD Global Research Foundation

The Foundation fund medical research and education to improve the quality of life for people and families living with facioscapulohumeral muscular dystrophy (FSHD).


Phone: (02) 8007 7037

Genetic and Rare Disease Network

The Genetic and Rare Disease Network (GaRDN) provides information to support individuals, families and carers living with genetic, rare and undiagnosed conditions.

GaRDN can assist with enquiries and resources relating to education, parenting, respite care, health services and other community support organisations.

Postal Address: PO Box 1023, Booragoon WA 6954

Phone: 1300 770 995


Muscular Dystrophy Foundation Australia

Phone: 0430 404 332


Myositis Association Australia

The Myositis Association Australia provides a network of support for people with myositis and their families.

Address: 14/10 Albany Lane Berry NSW 2535 Australia

Phone: 0421 314 138


Rare Voices Australia

Rare Voices Australia advocates for all Australians living with a rare disease to promote health policy and a healthcare system that works for those with rare diseases.

Postal address: PO Box 138, Mentone, Victoria, 3194

Phone: 0497 003 104


Save Our Sons Duchenne Foundation

Save Our Sons Duchenne Foundation supports people living with Duchenne across Australia by funding research and clinical trials, improving care, funding nurses and providing quality of life-enhancing equipment.

Phone: (02) 9544 6111


Spinal Muscular Atrophy (SMA) Australia

SMA Australia provides support for Australians living with SMA by offering a range of community-based initiatives and events.

Phone: (03) 9796 5744

Acknowledgment of Country

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We acknowledge the Traditional Owners of Country throughout Australia and recognize their continuing connection to land, waters and culture. We pay our respects to their Elders past, present and emerging.