L inks Page
These links are still being added to –if
you have any suggestions let us know.
Links in the
See Bottom of page for US Sites
New Links added July 08 !
www.uhad2bthere.co.uk
The Disability Information Website
|
|
www.uhad2bthere.co.uk
|
|
|
Factsheets - Articles - News - Can you Help - Message Board - Friends Links |
The Main Charity we all support - Lots of information, Research updates etc
The
Muscular Dystrophy Campaign is the only
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
·
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
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
http://www.mdpreston.co.uk
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.
The Walton Centre, NHS Trust,
|
The |
|
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
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
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
The Muscular Dystrophy Family Foundation
|
|
Charcot Marie
Tooth
International UK site |
|
|
|
|
|
|
|
|
European Organisation for Rare disorders |
|
|
|
|
|
The Jennifer Trust for Spinal
Muscular Atrophy - UK |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Muscular Dsytrophy group of Malta |
|
|
|
|
|
|
|
|
Association Espanola de Enfermedades Musculares
Gran Via Corts Catalanes 562, 8011,
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
Click here see
even more links
If you want a link added to
these pages please let us know.
Personal Web pages
Phil's Webpage - Becker
Muscular Dystrophy
Phil
lives in the