Support
Group network
Becker United support the initiative for Support groups to work together to become more effective so this is the list of links.
The links listed here is correct as I see it but there may be a few omissions which will be corrected as soon as I can
Association of Glycogen Storage Disease
The Association for Glycogen Storage Disease (UK) was founded in 1986 to
provide support and help for famlies affected by
glycogen storage disease.
Borrowash
Derbyshire
DE72 3GA
T: 01332 669 670
jandajacklin@surefish.co.uk
info@agsd.org.uk
http://www.agsd.org.uk
Children Living with Inherited Metabolic Diseases (CLIMB)
A national organisation working on behalf of
children, young people and families affected by metabolic disease.
CW2 6BG
T: 0870 7700 326
F: 0870 7700 327
steve@climb.org.uk
http://www.climb.org.uk
Central Core Disease Support System
Group
These websites have been set up by Jessica Keller, who
was diagnosed with central core disease at six-years-old. She formed an on-line
CCD support group - health.groups.yahoo.com/group/centralcoredisease/ - as well as a website with information about the condition. The link for
this website is shown below.
centralcoredisease@yahoo.com
http://www.geocities.com/centralcoredisease/index.html
CMT UK
Working to support those who are affected by Charcot-Marie-Tooth
Disease, also known as Hereditary Motor and Sensory Neuropathy or Peroneal Muscular Atrophy
CMT United Kingdom,
PO Box 5089,
Christchurch
BH23 7ZX
T: 0870 7744 314
secretary@cmt.org.uk
http://www.cmt.org.uk
Duchenne Family Support Group
A national charity run by families for families
affected by Duchenne muscular dystrophy.
37A Highbury New Park
London
N5 2EN
T: 08702 411 857
dfsg@duchenne.demon.co.uk
http://www.dfsg.org.uk
FSH Support Group
The FSH-MD Support Group aims to improve the quality
of life for all those with FSH and those who care for
them.
FSH-MD Support Group
8 Caldecote Gardens
Bushey Heath
Herts
WD23 4GP
T: 020 8950 7500
F: 020 8950 7300
http://www.fsh-group.org/
Guillain-Barré syndrome support group
The GBS Support Group provides information, support
and funds research and raises awareness of the conditions amongst health
professionals and the general public.
LCC Offices
Eastgate, Sleaford
Lincolnshire.
NG34 7EB
T: 01529 304615
F: 01529 304615
admin@gbs.org.uk
http://www.gbs.org.uk
The Jenifer
Trust For Spinal Muscular Atrophy (JTSMA )
T:0870 774 3651
Mitochondrial Myopathies Support Group
A support group run by people with the conditions and
their families, providing support, information and links with other affected
families.
3 Home Farm Cottages
Yearby, Nr Redcar
TS11 8HQ
T: 01642 480953
** mitolinks@aol.com **
email is incorrect
Myasthenia Gravis Assosciation
T:01332 290219
email is incorrect
Myotonic Dystrophy Support Group
Offers support by telephone and letter and contact with other families. Provides an 'ALERT' card to be carried by affected persons for use in
emergency situations
35a Carlton Hill
NG4 1BG
T: 0115 987 0080
F: 0115 987 6462
mdsg@tesco.net
http://www.mdsguk.org
Myotubular Myopathy
T:01753 891821
** simonhughes@btconnect.com **
email is incorrect
Myositis Support Group
Provides information and practical advice and research into dermatomyositis
(DM), polymyositis (PM), juvenile dermatomyositis
(JDMS), juvenile polymyositis
(JPM) and inclusion body myositis
(IBM).
Woolston
Hampshire
SO19 9HR
T: 023 80 449708
F: 023 80 396402
enquiries@myositis.org.uk
http://www.myositis.org.uk
Nemaline Myopathy
Support Group
T:
01968 674 998
Neuropathy Trust
Through education and communication to patients and healthcare professionals,
the aim of the Neuropathy Trust is to raise awareness and provide a lifeline to
everyone with the condition.
Nantwich
Cheshire
CW5 5FP
T: 01270 611828
http://www.neuropathy-trust.org
a.keen@neurocentre.com
OPMD Support Group
Set up in 2001, the Oculopharyngeal
muscular dystrophy (OPMD) Support Group provides
information and mutual support for anyone with this condition.
T: 0113 2753048
campearceuk@yahoo.co.uk
http://www.opmdsupport.co.uk/
Pompe Representative AGSD
(
T:01730 231554
PPUK (Parent Project
T: 02082814333
Spinal Bulbar Muscular Atrophy
c/o 57 Keysbrook
Tattenhall
CH3 9QP
T: 01829 771 266
http://www.sbma.org.uk