Other sources of support

Living with muscular dystrophy often means accessing support from a range of organisations throughout your journey. Alongside the services we provide, there are many trusted charities, healthcare organisations and support services offering specialist information, practical advice and additional resources.

This page brings together organisations that may be able to support you, your family and your loved ones. From condition specific charities and advocacy services to advice on benefits, employment, equipment and wellbeing, these organisations can help you access the information and support you need.

Please note that links to external websites are provided for your convenience. While we aim to signpost to trusted organisations, we are not responsible for the content of external websites.

Muscular dystrophy and neuromuscular conditions

Action Duchenne

Support, information and community for people affected by Duchenne muscular dystrophy. Practical guidance, educational resources, webinars, support groups, counselling, community events, and advocacy..

Bradley's Promise

Provides information and support for young people aged 16–25 living with life-limiting conditions, with a special interest in Duchenne Muscular Dystrophy, and their families.

CMT UK

Support, information and community for people living with Charcot-Marie-Tooth (CMT). Access exclusive resources, events, workshops, and conferences. Connect with others affected by CMT. Support research and advocacy.

Muscular Dystrophy UK muscle groups

Muscular Dystrophy UK run a network of support groups across the UK, for people to share experiences and meet other people affected by muscle-wasting conditions. They run online and in-person Muscle Groups across ten regions of England and in Scotland, Wales and Northern Ireland.

Muscle Help Foundation

Life changing experiences and support for children and young people with muscular dystrophy. The charity’s Muscle Dreams programme helps build confidence, reduce isolation, connect families and create lasting memories.

SMA UK

Support for people living with Spinal Muscular Atrophy (SMA). Provides personalised support, practical advice, and emotional guidance, grants to help manage the cost of living with SMA, peer support and connection events. Information and advice on diagnosis, care, education, and transitioning into adulthood.