The Standards of Care set out in The diagnosis and management of Duchenne muscular dystrophy are a valuable resource for care providers, patients and their families. However, as an academic publication, the language used in the article is not always accessible to people without a medical background.
The Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the United Parent Project Muscular Dystrophy have therefore worked together to produce a comprehensive “Guide for Families” based closely on the full academic article.
The guide can be used on its own or as a supplement to the academic document, and we hope that individuals with Duchenne and their families can use it in collaboration with their care providers to discuss their own specific care needs.
The guide is available online at www.dmd-guide.org
A downloadable version is also available for various languages at www.treat-nmd.eu/care/dmd/family-guide/translations/