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)01332 669 670 |
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 |
CMT United KingdomHelpline: 0800 652 6316 01202 432048 |
98 Broadway Southbourne Bournemouth BH6 4EH 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 304 615 |
Room 4, Lincolnshire County Council Covers Guillain-Barré Syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related neuropathies |
|
The Jennifer Trust for Spinal Muscular Atrophy (JTSMA) 01789 267 520 |
Elta House 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 |
|
Limb Girdle muscular dystrophy network 0800 652 6352 (freephone) |
C/o Muscular Dystrophy Campaign |
Mitochondrial Myopathies
|
This group covers mitochondrial myopathies |
Myasthenia Gravis Association01332 290 219 |
1st Floor Covers myasthenia gravis, Lambert-Eaton myasthenia syndrome and congenital myasthenia |
|
MyDy Trust (Myotonic Dystrophy Trust) 028 90791007 |
13 Knockcastle Park Covers myotonic dystrophy. Aims to run and fund an annual conference for people with the condition and bring latest information and research to Northern Ireland. Works closely with other groups in Northern Ireland |
| 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 0080 mdsg@tesco.net |
35a Carlton Hill Covers myotonic dystrophy (also known as Steinert's disease and dystrophia myotonica) and congenital myotonic dystrophy |
Myotubular Trust078 1320 0298 / 078 8530 9753 |
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) |
