We work closely with partner charities, support groups and linked organisations to offer the best advice and information.


We provide information and advice on more than 60 different types of muscle-wasting conditions. We also signpost to a range of other charities and groups, some of which are run by and for people with muscle-wasting conditions, their families and friends, and can put you in touch with people who have ‘been there’.

Some of the groups we work with are listed alphabetically below:

Action Duchenne

Covers Duchenne muscular dystrophy

CAN Mezzanine
49-51 East Road
London N1 6AH
T: 020 7250 8240
E: info@actionduchenne.org

Association for Glycogen Storage Disease (UK) Ltd 

Covers glycogen storage diseases including Von Gierke’s disease, Pompe disease, Andersen’s disease and McArdle disease

Old Hambledon Racecourse Centre
Sheardley Lane
SO32 3QY
T: 0300 123 2790
E: info@agsd.org.uk

The Information Point for centronuclear and myotubular myopathy

Covers centronuclear and myotubular myopathy – aims to provide information, support and raise awareness worldwide.
E:  centronuclear.org@btinternet.com

CMT United Kingdom

Covers Charcot Marie Tooth disease, also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy.

3 Groveley Road
Dorset BH23 3HB

T: 0300 323 6316
E: enquiries@cmt.org.uk 

Duchenne Family Support Group

National charity run by families for families affected by Duchenne muscular dystrophy. Provides a national support network for parents, families and professionals and helps bring families together for mutual support, sharing of information and experiences. National helpline and contact family network, and offers subsidised holidays and social activities

Helpline: 0870 606 1604 or 0800 121 4518
E: info@dfsg.org.uk

78 York Street
London W1H 1DP

FSH Support Group

Covers facioscapulohumeral muscular dystrophy

T: 0800 652 6352
E: fshgroup@hotmail.com

C/o Muscular Dystrophy UK
61A Great Suffolk Street
London SE1 0BU

Guillain-Barre & Associated Inflammatory Neuropathies (GAIN)

Covers Guillain-Barré Syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related neuropathies

Glennys Sanders House
Pride Parkway
NG34 8GL
Helpline: 0800 374 803

E: office@gaincharity.org.uk

Kennedy’s Disease UK

Covers spinal bulbar muscular atrophy (also known as Kennedy’s Disease)

Weymouth Road
T: 07970 878130
E: hello@kd-uk.com


Covers myasthenia gravis, Lambert-Eaton myasthenia syndrome and congenital myasthenia.

The College Business Centre
Uttoxeter New Road
DE22 3WZ

T: 01332 290219
E: info@myaware.org

Myositis UK

Covers juvenile dermatomyositis, inclusion body myositis and polymyositis

146 Newtown Road
SO19 9HR

T: 023 8044 9708
E: msg@myositis.org.uk

Myositis Friends Support Network

Covers inclusion body myositis, polymyositis, dermatomyositis and juvenile dermatomyositis

T. 07977 316429
E: val_derek@talktalk.net

Myotonic Dystrophy Support Group

Covers Myotonic dystrophy

19-21 Mian Road
Nottingham NG4 3HQ
T: 0115 987 5369
Helpline: 0808 169 1960

Myotubular Trust

Supports research into myotubular myopathy and centronuclear myopathy.

T: 078518 113 692

Nemaline Myopathy Support Group

Covers nemaline myopathy.

5 Cairnbank Gardens
EH26 9EA

T: 01968 674 998

Spinal Muscular Atrophy UK

Covers severe spinal muscular atrophy (Werdnig-Hoffman Disease, SMA type 1), intermediate spinal muscular atrophy (SMA type 2), mild spinal muscular atrophy (Kugelberg-Welander disease, SMA type 3) and adult onset spinal muscular atrophy, spinal muscular atrophy with respiratory distress (SMARD 1) and Kennedy’s.

40 Cygnet Court
Timothy’s Bridge Road
Stratford upon Avon
CV37 9NW

T: 01789 267520
E: office@smauk.org.uk


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