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International 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 international organisations that provide information that help you find your way.

You can find information about living with neuromuscular conditions from these international organisations. Remember, information, treatment or advice from overseas may not be relevant or available in Australia so please ask your medical team if you have questions.

Cure CMD (US)

Cure CMD has information about congenital muscular dystrophy, care guidelines, links to research and a podcast.

Duchenne UK

This website has an extensive range of information for families living with muscular dystrophy. You can download a DMD Family Folder, standards of care, emergency care advice and guides for employers, teachers and family/friends.

Muscular Dystrophy Association (US)

This website has excellent information about muscular dystrophy, ALS and related disease. You can find a full list of neuromuscular diseases, symptoms, causes and care options, as well as use the clinical trial finder tool.

Muscular Dystrophy UK

This website has information about living with muscle-wasting conditions, as well as online training modules for GPs and health professionals.

Myotonic Dystrophy Foundation (US)

This is a great source of information about myotonic dystrophy, including clinical care recommendations for adults and children, testing and diagnosis, and family planning.

Parent Project Muscular Dystrophy (US)

You can find an excellent range of resources and information about Duchenne muscular dystrophy, including teachers guides, classroom resources, videos, downloadable books, care guidelines and transition planning resources.

Treat NMD

Treat NMD is a global network promoting clinical research and best practice care for neuromuscular diseases. You can find standards of care as well as information about diseases and clinical trials.

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.