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
Email: cmtaa2@cmt.org.au
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).
Email: admin@fshdglobal.org
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
Email: hello@gardn.org.au
Muscular Dystrophy Foundation Australia
Phone: 0430 404 332
Email: info@mdaustralia.org.au
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
Email: info@myositis.org.au
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
Email: info@rarevoices.com.au
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
Email: info@saveoursons.org.au
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
