Partner charities
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 disease. We also signpost to a range of other charities and groups, some of which are run by and for people with muscle disease, 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 Duchenne020 8556 9955 |
Epicentre Covers Duchenne muscular dystrophy |
Association for Glycogen Storage Disease (UK) Ltd0300 123 2790 |
Old Hambledon Racecourse Centre Covers glycogen storage diseases including Von Gierke's disease, Pompe disease, Andersen's disease and McArdle's disease |
Becker United |
This group covers Becker muscular dystrophy |
CLIMB Children Living with Inherited Metabolic Diseases0800 652 3181 |
176 Nantwich Road Covers all inherited metabolic diseases which also includes mitochondrial myopathy |
The Information Point for centronuclear and myotubular myopathy
|
Covers centronuclear and myotubular myopathy - aims to provide information, support and raise awareness worldwide. |
CMT United KingdomHelpline: 0800 652 6316 01202 432048 |
98 Broadway Covers Charcot- Marie- Tooth disease, also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy |
| Duchenne Family Support Group
Helpline: 0870 606 1604 |
78 York Street London W1H 1DP 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 |
| FSH Support Group
0800 652 6352 |
C/o Muscular Dystrophy Campaign Covers facioscapulohumeral muscular dystrophy |
| GBS Support Group
01529 469 910 |
GBS Support Group Covers Guillain-Barré Syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related neuropathies |
|
The Jennifer Trust for Spinal Muscular Atrophy (JTSMA) 01789 267 520 |
40 Cygnet Court 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 |
|
Telephone: 07707511117 |
85 Fall Lane |
Myasthenia Gravis Association0800 919922 01332 290 219 |
The College Business Centre Covers myasthenia gravis, Lambert-Eaton myasthenia syndrome and congenital myasthenia |
| Myositis Support Group
023 8044 9708 msg@myositis.org.uk
|
146 Newtown Road Covers juvenile dermatomyositis, inclusion body myositis and polymyositis |
|
Myotonic Dystrophy Support Group 0115 987 5869 |
35a Carlton Hill Covers myotonic dystrophy (also known as Steinert's disease and dystrophia myotonica) and congenital myotonic dystrophy |
Myotubular Trust078518 113 692 |
Covers myotubular myopathy and fundraises for research into myotubular myopathy |
| Nemaline Myopathy Support Group
01968 674 998
|
5 Cairnbank Gardens Covers nemaline myopathy |
| Neuropathy Trust
01270 611 828 |
PO Box 26 Covers neuropathies |
SBMA UK01829 771 266 |
57 Keysbrook Covers spinal bulbar muscular atrophy (also known as Kennedy's Disease) |
