Searching for Duchenne Muscular Dystrophy Parent Support information? Find all needed info by using official links provided below.
The Duchenne Family Support Group (DFSG) exists to provide support for families with children diagnosed as having Duchenne Muscular Dystrophy (DMD). The DFSG is a national charity run by families for families affected by DMD. It provides a positive national support network of parents, their families and professionals.
https://www.parentprojectmd.org/care/for-families/for-newly-diagnosed/get-support/
Parent Project Muscular Dystrophy’s Annual Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy …
https://www.parentprojectmd.org/
Parent Project Muscular Dystrophy (PPMD) fights to end Duchenne muscular dystrophy. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.
https://www.parentprojectmd.org/care/care-and-support-materials/
Support & Care Materials English Care Guide for Families. The updated Guide for Families can be used in different ways. You might find it easier to focus on a specific stage of Duchenne, or it may be more helpful to concentrate on a specific area related to care, such as steroids, cardiac, etc.
http://join.parentprojectmd.org/site/PageServer?pagename=race_to_end_duchenne_our_mission
Race to End Duchenne raises funds to support Parent Project Muscular Dystrophy's mission to end Duchenne muscular dystrophy, a fatal genetic disorder that slowly robs people of their muscle strength. Those with Duchenne are truly in a race against time as their muscles …
http://www.musculardystrophyuk.org/wp-content/uploads/2015/02/A-guide-for-parents-Duchenne-muscular-dystrophy-online-version-w-disclaimer.pdf
Duchenne muscular dystrophy is a life-shortening muscle-wasting condition, caused by the lack of a vital muscle protein called dystrophin. The condition causes muscles to weaken and waste over time, leading to increasing and severe disability.
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