Useful links

Category 4: Condition specific

Queen Square Centre for Neuromuscular Diseases (CNMD), London

Centre in London for people with neuromuscular conditions offering healthcare services, training and research.

visit website

Neuromuscular Centre (NMC), Winsford

Centre in Cheshire for people with neuromuscular conditions offering support and advice, training, physiotherapy and complementary therapy.

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Muscular Dystrophy Support Centre (MDSC), Coventry

Centre and charity in Coventry for people with neuromuscular conditions offering specialised physical therapies and support.

visit website

Action Duchenne

Charity providing support to people with Duchenne Muscular Dystrophy.

visit website

CMT United Kingdom

Charity providing support to people with Charcot-Marie-Tooth Disease

visit website

DMD Pathfinders

A user-led organisation that promotes choice, control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK.

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Spinal Muscular Atrophy Support UK

Advice and support for people living with Spinal Muscular Atrophy.

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Association for Glycogen Storage Diseases (GSD)

Charity that provides both practical and emotional support across all GSD’s and their variants.

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Muscular Dystrophy UK (MDUK)

Charity that provides information and advice about neuromuscular conditions.

visit website


National network that is part of Muscular Dystrophy UK and campaigns for change and provide guidance for young disabled people.

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Myositis UK

Charity providing support to people with Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.

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Lily foundation

Charity that supports people with mitochondrial disease, raises awareness and funds research into prevention, diagnosis and treatment.

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Kennedy’s Disease Association (USA)

A non-profit organisation that provides information, support, links to patient’s Facebook groups and research.

visit website

Motor Neuron Disease Association

Charity that provides some basic info on Kennedy’s Disease, but remains the best source for information on Motor Neuron Disease in general.

visit website

Myotonic Dystrophy support group (MDSG)

Charity providing information and support for people with Myotonic Dystrophy.

visit website
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