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Single Gene Disorders and Disability (SGDD) |
Muscular Dystrophy Association (MDA)
The MDA is a voluntary health organization comprising health
scientists and citizens with the goal of conquering neuromuscular
diseases. MDA combats neuromuscular diseases through programs of
worldwide research, comprehensive medical and community services,
and public health education.
Muscular Dystrophy Family Foundation (MDFF)
The MDFF has comprehensive medical and emotional support programs
and also provides adaptive equipment for patients and families
affected by neuromuscular diseases.
National Initiative for Families With Duchenne (NIFD)
NIFD is a large-scale needs assessment survey of the Duchenne
muscular dystrophy community that is offered to families and
physicians. This survey will help get information about medical
care that people who have DMD get and difficulties that families
face in getting the services that they need. The goal of the survey
is to help make living with DMD easier.
National Institute of Neurological Disorders and Stroke (NIDS)
The National Institute of Neurological Disorders and Stroke (NINDS)
conducts and supports research on brain and nervous system
disorders.
Parent Project Muscular Dystrophy (PPMD)
PPMD is a parent organization that tries to improve the treatment,
quality of life, and longterm outlook of individuals affected by
Duchenne and Becker muscular dystrophies through research,
advocacy, and education.
World Forum Neuromuscular Disease
World Forum Neuromuscular Disease is a website that has information
about neuromuscular diseases in different countries. The website has
information about different neuromuscular diseases and organizations
in different countries.
 Provides
link to non-governmental sites and does not
necessarily represent the views of the Centers for
Disease Control and Prevention. |
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Date: September 1, 2006
Content source: National Center on Birth Defects and Developmental
Disabilities
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