This guide for families for the diagnosis and management of Duchenne Muscular Dystrophy (DMD) summarises the results of an international consensus. These standards of care are a valuable resource for patients and their families as well as for care providers.
The comprehensive family guide was prepared in collaboration of the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the United Parent Project Muscular Dystrophy. The guide is available printed as well as online (http://en.care-nmd.eu/international/family-guide). It was implemented as application for smartphones and tablets at the Center for Medical Biometry and Medical Informatics of the Medical Center – University of Freiburg (Germany). New interactive functions to store medication and examination results are available to you also, as well as a reminder option for the regular examinations.
We hope that individuals with Duchenne and their families can use this guide in collaboration with their care providers to discuss their own specific care needs. This guide is available in English and German.