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General
Practice Notebook - Duchenne muscular dystrophy -
Clinically-oriented
information.
http://www.gpnotebook.co.uk/MedwebPage.cfm?ID=-885719035 A Guide
for Parents -
This booklet is for people with someone in their family who
has Duchenne muscular dystrophy. Includes an overview, medical and surgical
care, general care, emotional support and every day living.
http://www.mda.org.au/publication/guide/mdaguide.html
HealtHub -
A brief
definition of muscular dystrophy, followed by links to overviews, full text
articles, research projects and organizations.
http://www.healthubs.com/dystrophyLiving For Today, Preparing For
Tomorrow -
Reference for parents of boys with Duchenne Muscular Dystrophy.
Along with practical and health-related articles are poetry and personal
stories.
http://www.livingfortoday.org
MDA Ride For Life -
Pennsylvania ride to benefit the Muscular Dystrophy Association. Information
on results, money raised and its distribution. Sponsored by the Eastern
Harley-Davidson Dealers Association, held annually in May.
http://www.mdarideforlife.org/Muscular
Dystrophy Campaign -
Muscular Dystrophy Campaign for Government funding.
This has information about efforts to increase government spending for
muscular dystrophy in the UK.
http://www.see-search.com/musculardystrophycampaign.htm
Muscular
Dystrophy Community -
Message boards and chat dedicated to sharing
information, offering support, and coping strategies to better cope with this
disease. Community moderated by volunteers.
http://community.healingwell.com/community/?f=43National Registry of
Myotonic Dystrophy and FSHD Patients and Family Members -
Connecting
researchers and patients. Participation, purpose, investigators, personnel and
contact information.
http://www.urmc.rochester.edu/nihregistry/
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