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 want to help you cope with the diagnosis and plan your child’s care. So, we’ve produced a set of resources that we hope will help you:

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. 

Order The DMD Family Folder

Support and guidance to help parents navigate a DMD diagnosis

You may have already received a folder from your neuromuscular consultant, especially if they are part of the North Star Network. If not, each family in the UK can request one folder by filling in the form below.

If you are a healthcare professional, or work with patients with DMD, and would like a copy, please email [email protected]

This is a UK folder. It is about services provided in the United Kingdom. Not all the information in the folder will be relevant to people in other countries. Please note we are only able to post folder to UK addresses.

If you are outside the UK you can download the chapters from the folder by clicking here.

This folder is FREE to all DMD families in the UK. If you are able to donate £10 to cover the cost of the folder and the postage we would be very grateful, donate here.

The Guides

We know that it can be difficult to talk to others about DMD, particularly when you are still trying to come to terms with the diagnosis yourself.

So, we have create a series of guides:

We’re also aware of the financial implications of having a child with DMD. So, we have created the below guide: