Links
Sorry this Page needs checking and updating some links may be out of date or wrong...
These links are still being added to –if you have any suggestions let us know.
Links in the USA and other countries are also included below.
UK Sites - See also links on the Support Group Network pages
See Bottom of page for US Sites
The Main Charity we all support - Lots of information, Research updates etc
The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders.
It has pioneered the search for treatments and cures for over 40 years and provides practical, medical and emotional support to people affected by the condition.
Northern Ireland regional Page
West Midlands the South & Wales
Target MD included an article on them in 2002 which we have copied with permission.
Link to Meeting ,Conferences & Events page
Muscular Dystrophy Ireland (MDI )
Providing support to persons with neuromuscular conditions and their families
The site also includes some links in Ireland and around the world .
Muscular Dystrophy Ireland Information
Other Links
The NMC is unique there is no other centre quite like this in the Uk We have a team of Chartered Physiotherapists who specialise in the management of neuromuscular conditions. The Centre and department are fully equipped and adapted to provide an environment which can help in our rehabilitation We provide assessments and treatment advice which can assist you. We can carry out treatments which can assist you. We can provide advice about equipment which can help you. The Centre has a support network , so you can meet with others who have similar experiences to yourself.Associated to the Neuromuscular Centre is the design company. NMC Design is a Graphic Design Company which offers sheltered employment opportunities to young people with MD, in a supported working environment.
A charity set up by parents and supporters of children with Duchenne and Becker Muscular Dystrophy.
The groups aims include:
· to raise funds for UK research projects; to campaign for Governments support and funding for research
· to educate people in our local communities on the effects and causes of DMD and BMD
· to provide a community website to allow parents and supporters the chance to organise support in their communities
· to educate people in our local communities on the effects and causes of DMD and BMD
Setup by Parent Project Uk
The DMD Registry - Why you must sign up today
Do you know the deletion or variation of you or your childs dystrophin gene? No? How will you know if the new gene therapies or drugs that are being trialled will be of use as a therapy?
The DMD Registry is a database that has been launched to help fast track clinical trials and offer families the very latest information on new treatments for Duchenne and Becker Muscular Dystrophy How to register
The Duchenne Family Support Group
The Duchenne Family Support Group is a national charity run by families for families affected by Duchenne Muscular Dystrophy ( DMD ). They strive to provide a positive national support network for parents, their families and professionals working within or providing support services for people affected by DMD.
View the article from Target MD in 2001 here –Click to view note as this is a scanned image it will take a while to load.
Preston & District Support Group Website
Set up in 2001, the Preston and District Support Group holds informal meetings on a regular basis to provide support for people who are affected by muscular dystrophy, and their families.
http://www.mdpreston.co.uk
A UK-wide charity that provides support, advice and information for families with disabled children, this link is for Becker MD but their site covers many medical conditions and through them gives you the chance to get in touch with others who are affected by the same or similar disabilities and medical conditions. As of 28th Nov 2005 there were no listed contacts with Becker MD but there were contacts with other Muscular Dystrophy conditions eg Congenital MD and Ullrich MD Band you may find useful information available via their site.
A network of local disability information and advice services run by and for disabled people offering advice and information on all aspects of living with a disability.
UK Clinics
The Walton Centre, NHS Trust, Lower Lane, Liverpool, L9 7LJ Tel: 0151 525 3611
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The UK's only neuroscience NHS Trust -providing services in Neurology, Neurosurgery and pain relief |
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MD Forums
Duchenne muscular dystrophy forum
Set up by a someone with Duchenne muscular dystrophy, this is a community where people with Duchenne, other muscular disabilities and anyone who wants to, can talk about issues affecting them.
http://www.dmdforum.com
MD Forum
The MD Forum is a point of contact for people who have muscular dystrophy, and their family and friends. The site provides the latest news, and forums where people can write about the issues that matter to them.
http://www.mdforum.co.uk/forum/
Another Muscular Dystrophy discussion board from MSN
http://uk.msnusers.com/musculardystrophychat/general.msnw
Sites in the USA
Muscular Dystrophy Association of the USA
The Muscular Dystrophy Association is a voluntary health agency — a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans. MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education.
A Site with links & Contacts designed to serve as a conduit between people affected by Becker Muscular Dystrophy, including patients, families, doctors and scientists. This site can hopefully serve as a BMD community on the web. Please fill out the questionnaire to become a part of the BMD community on the web. To find people with BMD, visit our database of BMD patients. They have had visitors from all over the world
See Brad Stephenson ion the members list
http://www.beckermusculardystrophy.org/bmd_links.htm -BMD links on his site
The Muscular Dystrophy Family Foundation
The MDFF is an agency who’s mission is to fund adaptive equipment including wheelchairs ,van lifts etc and can help you get the equipment you need. They offer comprehensive support programs to take care of medical and emotional needs with case managers to help you through every stage of the process. Their site gives a lot more details and they help hundreds of families each year find the equipment they need .
Muscular Dystrophy Patients United
The main goal of the MDP is to provide support, education, and information about Muscular Dystrophy and all of the diseases that fall within its Boundaries. The aim of our group, Muscular Dystrophy Patients United, is to raise money, in the Flint, Michigan area for the Muscular Dystrophy Family Foundation. This is because the Muscular Dystrophy Family Foundation offers children and adults with Muscular Dystrophy services that other organizations do not offer The Muscular Dystrophy Patients United office is in Burton,MI.
The Muscular Dystrophy Family Foundation
The MDFF is an agency in the USA who’s mission is to fund adaptive equipment including wheelchairs ,van lifts etc and can help you get the equipment you need. They offer comprehensive support programs to take care of medical and emotional needs with case managers to help you through every stage of the process. Their site gives a lot more details and they help hundreds of families each year find the equipment they need .
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Charcot Marie Tooth International UK site
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European Organisation for Rare disorders
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The Jennifer Trust for Spinal Muscular Atrophy - UK
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Muscular Dsytrophy group of Malta
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Malta
Spain
Association Espanola de Enfermedades Musculares
Gran Via Corts Catalanes 562, 8011, BARCELONA
Phone: 34.3 45 16 544 - Fax: 34.3 45 16 904
E-mail: asem15@suport.org
Turkiye KasHastaliklari Dernegi
http://www.kashastaliklari.org.tr
Personal Web pages
Phil's Webpage - Becker Muscular Dystrophy
Phil lives in the USA this is his own site and has some links to useful sites-Try it