The DMD Family Folder

Support and guidance to help parents navigate a DMD diagnosis

If your child has recently been diagnosed with DMD, you’re likely to be feeling grief-stricken and overwhelmed. As DMD parents, we know how tough it is to hear this news.

We hope the folder will help you cope with the diagnosis and plan your child’s care.

The folder includes information about DMD and how you can look after your child, your family and yourself. It will help you protect their health, manage their education and make the most of life.

Understanding your child’s condition will empower you and give you back a sense of control. And it will help you lobby for your child and get them the best possible care.

Please note information in the folder is based around services provided in the United Kingdom, so not all the information will be relevant to people living in other countries outside of the UK.

Click below to download each chapter as a PDF:

Chapter 1 - An Introduction (What is DMD and what to do after diagnosis)

Chapter 2 - Child and Family (Looking after your child, family and yourself)

Chapter 3 - Home

Chapter 4 - School

Chapter 5 - Financial Care and Support

Chapter 6 - Holidays and Fun

Chapter 7 - Research and Clinical Trials

Chapter 8 - Emergencies

Chapter 9 - Contacts

We have also created a series of guides as resources for the Duchenne community to help talk to others about DMD:

We’re aware of the financial implications of having a child with DMD. So, our final guide is:

Families based in the UK can order a copy of the folder, CLICK HERE to fill in the order form.

If possible, please make a donation to cover the cost of producing the folder DONATE HERE