Family guide

Family guide
  • Contact
  • Thomas Sejersen
    Thomas Sejersen
    Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women's and Children's...

The consensus document The Diagnosis and management of Duchenne muscular dystrophy was published over two editions of the Lancet Neurology in January and February 2010. The result of a three-year-long project guided by the US Centers for Disease Control (CDC) and with input from 84 leading DMD specialists worldwide, this article is a valuable resource for doctors and therapists involved in DMD care, as well as for individuals with DMD and their families. However, as an academic publication, it is not always written in language 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.

To ensure as many people as possible have access to this information we provide the guide in a number of format and also in a number of languages.

Please note: Although the formats are different the information provided is the same

1) Download

From this page you can download a PDF version of the printed brochure which is now available in a number of different languages. The brochure version contains many photos kindly provided by Duchenne patient organisations from around the world. We have also provided on this page 'print friendly' versions that are mostly in black & white with many of the images removed.

2) Online

Find out more here about the accessing the family guide online via devices such as tablets and smartphones as well as desktop machines. The online version of the guide is available in a number of different languages with more in due course.

3) Android app

Here you will be able to find out more about how to access the Android app which is available in both English and German.

31 Aug 2016