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Action Duchenne
This group covers Duchenne muscular dystrophy.
Epicentre
41 West Street
London
E11 4LJ
T: 020 8556 9955
http://www.actionduchenne.org
Association for Glycogen Storage Disease (UK)
This group covers glycogen storage diseases including Von Gierke's disease, Pompe's disease, Andersen's disease and McArdle's disease.
T: 01332 669 670
info@agsd.org.uk
http://www.agsd.org.uk
Becker United
This group covers Becker muscular dystrophy.
beckersmd@hotmail.com
http://www.beckerunited.com
Carer's Friends
Carer's friends supporting those who care. Providing friendship to each other though membership where people in similar circumstances can make friends with those who understand.
info@carersfriends.co.uk
http://www.carersfriends.co.uk/
The Children's Mitochondrial Disease Network
EMDN
MAYFIELD HOUSE
30 Heber Walk
Chester Way
Northwich
CW9 5JB
T: 01606 43 946
info@cmdn.org.uk
http://www.emdn-mitonet.co.uk/index.htm
CLIMB Children Living with Inherited Metabolic Diseases
This group covers all inherited metabolic diseases which also includes mitochondrial myopathy.
CLIMB Building,
176 Nantwich Road
Crewe.
CW2 6BG
T: 0800 652 3181
http://www.climb.org.uk
CMT United Kingdom
This group covers Charcot-Marie-Tooth disease, also known as hereditary motor & sensory neuropathy (HMSN) or peroneal muscular atrophy.
PO Box 5089
Christchurch
BH23 7ZX
T: 0800 6526316 or 01202 481161
http://www.cmt.org.uk
DM Chat
This discussion forum is a place for people with myotonic dystrophy to share stories and experineces, and to make new friends.
http://www.dmchat.org.uk
Duchenne Family Support Group
A national charity run by families for families affected by Duchenne muscular dystrophy. It provides a positive national support network of parents, families and professionals. It also helps bring families together for mutual support, sharing of information and experience, and social activities.
78 York Street
London
W1H 1DP
T: 0870 241 1857 Helpline: 0870 606 1604
info@dfsg.org.uk
http://www.dfsg.org.uk
Duchenne MD Support Group
The Duchenne MD Support Group has been formed for people to share their experiences in dealing with the disease.
http://health.groups.yahoo.com/group/Duchenne_MD_Support_Group/
Duchenne Muscular Dystrophy Trust
Fundraises solely to exclusively fund Duchenne/Becker research, worldwide.
T: 0208 123 7257
F: 08707 062899
DMDTrust@DMDTrust.com
http://www.DMDTrust.com
FSH Support Group
This group covers facioscapulohumeral muscular dystrophy.
C/O Muscular Dystrophy Campaign
61 Southwark Street
London
SE1 0HL
You can find individual FSH Support Group local contacts here.
T: Tel: 020 7803 4800
http://www.fsh-group.org/
FSH United
Run by fsher's Aaron Pearce and Carol Lawson. This is a website with an Interactive Forum which brings members together by sharing news and experiences under topics such as fsh research, getting help, support aids, equipment, health, claiming benefits, social services and adaptions. It also hosts a Chat Night every other Thursday evening from 7.30pm.
http://www.fsh-united.co.uk/
FSH website
Run by a gentleman who has FSH. This is an information site and will include all things involved with FSH.
http://www.fshers.co.uk
GBS Support Group
GBS Support Group covers Guillain-Barré Syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related neuropathies.
Room 4, Lincolnshire County Council Offices
Eastgate, Sleaford
Lincolnshire.
NG34 7BG
T: 01529 304 615 Helpline: 0800 374 803
http://www.gbs.org.uk
Jennifer Trust for Spinal Muscular Atrophy (JTSMA)
This group 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.
Elta House
Birmingham Road
Stratford upon Avon
Warwickshire
CV37 0AQ
T: 01789 267 520 Helpline: 0800 975 3100 (9am to 9pm)
jennifer@jtsma.org.uk
http://www.jtsma.org.uk
Minicore Multicore Myopathy
This is an email support group started by a mother of a young adult with minocore multicore myopathy.
TheBluebirdandTheRose@yahoogroups.co.uk
http://www.groups.yahoo.com/group/TheBluebirdAndTheRoseSupportGroup
Mitochondrial Myopathies
This group covers mitochondrial myopathies.
http://www.communigate.co.uk/ne/mitolinks
Muscular Dystrophy Forum
This forum has been set up as a place for all muscular dystrophy related chat, help and advice. There are various sections to keep you updated with what's happening and a great way to meet fellow members with MD. There is also a fundraising section with great ideas and a way to advertise your campaign for MD.
http://www.md.forum5.com
Muscular Dystrophy Patients United
Muscular Dystrophy Patients United (MDP) is dedicated to providing services to patients and families with muscular dystrophy. Its goal is to implement advocacy, support, special clinic, camp, transportation, care, mentoring, and informational services to those with muscular dystrophy
links@muscular-dystrophy-patients-united.com
http://www.muscular-dystrophy-patients-united.com
Myasthenia Gravis Association
This group covers myasthenia gravis, Lambert-Eaton myasthenia syndrome and congenital myasthenia.
1st Floor
Southgate Business Centre
Normanton Road
Derby
DE23 6UQ
T: 01332 290 219
http://www.mgauk.org
MyDy Trust
This group covers myotonic dystrophy and aim to run and fund an annual conference specifically for people affected by myotonic dystrophy to bring the latest research and information about the condition to Northern Ireland, and to offer local support. We will work closely with the other support groups and with the Muscular Dystrophy Campaign in Northern Ireland.
13 Knockcastle Park
Belfast
BT 5 6 NA
T: 028 9079 1007
mydytrust@hotmail.co.uk
Myositis Support Group
This group covers dermatomyositis and polymyositis.
146 Newtown Road
Woolston
Southampton
Hampshire
SO19 9HR
T: 023 8044 9708
msg@myositis.org.uk
http://www.myositis.org.uk
Myotonic Dystrophy Support Group
This group covers myotonic dystrophy (also known as Steinert's disease and dystrophia myotonica) and congenital myotonic dystrophy.
35A Carlton Hill
Nottingham
NG4 1BG
T: 0115 987 0080
mdsg@tesco.net
http://www.mdsguk.org
Myotubular Trust
This group covers myotubular myopathy. The group fundraise for research into myotubular myopathy.
T: 078 1320 0298 or 078 8530 9753
contact@myotubulartrust.com
http://www.myotubulartrust.com
Nemaline myopathy
This group covers nemaline myopathy.
5 Cairnbank Gardens
Penicuik
Midlothian
EH26 9EA
T: 01968 674 998
http://www.nemaline.org
Neuropathy Trust
This group covers neuropathies.
PO Box 26
Nantwich
Cheshire
CW5 5FP
T: 01270 611828
http://www.neuropathy-trust.org
OPMD Support Group
This group covers oculopharyngeal muscular dystrophy.
13 Helmsley Road
Leeds
LS16 5JA
T: 0113 275 3048
campearceuk@yahoo.co.uk
http://www.opmdsupport.co.uk/
SBMA UK
This group covers spinal bulbar muscular atrophy also known as Kennedys Disease.
57 Keysbrook
Tattenhall
Cheshire
CH3 9QP
T: 01829 771 266
info@sbma.org.uk
http://www.sbma.org.uk
This group covers Duchenne muscular dystrophy.
Epicentre
41 West Street
London
E11 4LJ
T: 020 8556 9955
http://www.actionduchenne.org
Association for Glycogen Storage Disease (UK)
This group covers glycogen storage diseases including Von Gierke's disease, Pompe's disease, Andersen's disease and McArdle's disease.
T: 01332 669 670
info@agsd.org.uk
http://www.agsd.org.uk
Becker United
This group covers Becker muscular dystrophy.
beckersmd@hotmail.com
http://www.beckerunited.com
Carer's Friends
Carer's friends supporting those who care. Providing friendship to each other though membership where people in similar circumstances can make friends with those who understand.
info@carersfriends.co.uk
http://www.carersfriends.co.uk/
The Children's Mitochondrial Disease Network
EMDN
MAYFIELD HOUSE
30 Heber Walk
Chester Way
Northwich
CW9 5JB
T: 01606 43 946
info@cmdn.org.uk
http://www.emdn-mitonet.co.uk/index.htm
CLIMB Children Living with Inherited Metabolic Diseases
This group covers all inherited metabolic diseases which also includes mitochondrial myopathy.
CLIMB Building,
176 Nantwich Road
Crewe.
CW2 6BG
T: 0800 652 3181
http://www.climb.org.uk
CMT United Kingdom
This group covers Charcot-Marie-Tooth disease, also known as hereditary motor & sensory neuropathy (HMSN) or peroneal muscular atrophy.
PO Box 5089
Christchurch
BH23 7ZX
T: 0800 6526316 or 01202 481161
http://www.cmt.org.uk
DM Chat
This discussion forum is a place for people with myotonic dystrophy to share stories and experineces, and to make new friends.
http://www.dmchat.org.uk
Duchenne Family Support Group
A national charity run by families for families affected by Duchenne muscular dystrophy. It provides a positive national support network of parents, families and professionals. It also helps bring families together for mutual support, sharing of information and experience, and social activities.
78 York Street
London
W1H 1DP
T: 0870 241 1857 Helpline: 0870 606 1604
info@dfsg.org.uk
http://www.dfsg.org.uk
Duchenne MD Support Group
The Duchenne MD Support Group has been formed for people to share their experiences in dealing with the disease.
http://health.groups.yahoo.com/group/Duchenne_MD_Support_Group/
Duchenne Muscular Dystrophy Trust
Fundraises solely to exclusively fund Duchenne/Becker research, worldwide.
T: 0208 123 7257
F: 08707 062899
DMDTrust@DMDTrust.com
http://www.DMDTrust.com
FSH Support Group
This group covers facioscapulohumeral muscular dystrophy.
C/O Muscular Dystrophy Campaign
61 Southwark Street
London
SE1 0HL
You can find individual FSH Support Group local contacts here.
T: Tel: 020 7803 4800
http://www.fsh-group.org/
FSH United
Run by fsher's Aaron Pearce and Carol Lawson. This is a website with an Interactive Forum which brings members together by sharing news and experiences under topics such as fsh research, getting help, support aids, equipment, health, claiming benefits, social services and adaptions. It also hosts a Chat Night every other Thursday evening from 7.30pm.
http://www.fsh-united.co.uk/
FSH website
Run by a gentleman who has FSH. This is an information site and will include all things involved with FSH.
http://www.fshers.co.uk
GBS Support Group
GBS Support Group covers Guillain-Barré Syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related neuropathies.
Room 4, Lincolnshire County Council Offices
Eastgate, Sleaford
Lincolnshire.
NG34 7BG
T: 01529 304 615 Helpline: 0800 374 803
http://www.gbs.org.uk
Jennifer Trust for Spinal Muscular Atrophy (JTSMA)
This group 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.
Elta House
Birmingham Road
Stratford upon Avon
Warwickshire
CV37 0AQ
T: 01789 267 520 Helpline: 0800 975 3100 (9am to 9pm)
jennifer@jtsma.org.uk
http://www.jtsma.org.uk
Minicore Multicore Myopathy
This is an email support group started by a mother of a young adult with minocore multicore myopathy.
TheBluebirdandTheRose@yahoogroups.co.uk
http://www.groups.yahoo.com/group/TheBluebirdAndTheRoseSupportGroup
Mitochondrial Myopathies
This group covers mitochondrial myopathies.
http://www.communigate.co.uk/ne/mitolinks
Muscular Dystrophy Forum
This forum has been set up as a place for all muscular dystrophy related chat, help and advice. There are various sections to keep you updated with what's happening and a great way to meet fellow members with MD. There is also a fundraising section with great ideas and a way to advertise your campaign for MD.
http://www.md.forum5.com
Muscular Dystrophy Patients United
Muscular Dystrophy Patients United (MDP) is dedicated to providing services to patients and families with muscular dystrophy. Its goal is to implement advocacy, support, special clinic, camp, transportation, care, mentoring, and informational services to those with muscular dystrophy
links@muscular-dystrophy-patients-united.com
http://www.muscular-dystrophy-patients-united.com
Myasthenia Gravis Association
This group covers myasthenia gravis, Lambert-Eaton myasthenia syndrome and congenital myasthenia.
1st Floor
Southgate Business Centre
Normanton Road
Derby
DE23 6UQ
T: 01332 290 219
http://www.mgauk.org
MyDy Trust
This group covers myotonic dystrophy and aim to run and fund an annual conference specifically for people affected by myotonic dystrophy to bring the latest research and information about the condition to Northern Ireland, and to offer local support. We will work closely with the other support groups and with the Muscular Dystrophy Campaign in Northern Ireland.
13 Knockcastle Park
Belfast
BT 5 6 NA
T: 028 9079 1007
mydytrust@hotmail.co.uk
Myositis Support Group
This group covers dermatomyositis and polymyositis.
146 Newtown Road
Woolston
Southampton
Hampshire
SO19 9HR
T: 023 8044 9708
msg@myositis.org.uk
http://www.myositis.org.uk
Myotonic Dystrophy Support Group
This group covers myotonic dystrophy (also known as Steinert's disease and dystrophia myotonica) and congenital myotonic dystrophy.
35A Carlton Hill
Nottingham
NG4 1BG
T: 0115 987 0080
mdsg@tesco.net
http://www.mdsguk.org
Myotubular Trust
This group covers myotubular myopathy. The group fundraise for research into myotubular myopathy.
T: 078 1320 0298 or 078 8530 9753
contact@myotubulartrust.com
http://www.myotubulartrust.com
Nemaline myopathy
This group covers nemaline myopathy.
5 Cairnbank Gardens
Penicuik
Midlothian
EH26 9EA
T: 01968 674 998
http://www.nemaline.org
Neuropathy Trust
This group covers neuropathies.
PO Box 26
Nantwich
Cheshire
CW5 5FP
T: 01270 611828
http://www.neuropathy-trust.org
OPMD Support Group
This group covers oculopharyngeal muscular dystrophy.
13 Helmsley Road
Leeds
LS16 5JA
T: 0113 275 3048
campearceuk@yahoo.co.uk
http://www.opmdsupport.co.uk/
SBMA UK
This group covers spinal bulbar muscular atrophy also known as Kennedys Disease.
57 Keysbrook
Tattenhall
Cheshire
CH3 9QP
T: 01829 771 266
info@sbma.org.uk
http://www.sbma.org.uk
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