DMD Guide

This family guide for the diagnosis and management of Duchenne Muscular Dystrophy (DMD) summarises the results of an international consensus on the medical care. 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 is available printed as well as online (http://en.care-nmd.eu/international/family-guide) and was developed as applikation for smartphones at the Center for Medical Biometry and Medical Informatics of the Medical Center – University of Freiburg (Germany).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. This guide is available in English and German, translations into other languages are planned. This page will be continuously updated as new versions are produced.