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 DMD Family Folder
  • A set of Guides to DMD for family and friends, employers, teachers and babysitters
  • A Guide to Finances for DMD Parents

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]

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. We are only able to post folder to UK addresses, you can download the chapters further down this page or by clicking here.

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

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.  

DOWNLOADABLE CHAPTERS AS PDF's:

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

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’re creating a series of guides which will be available soon:

  • Guides to DMD for family and friends
  • Guides to DMD for employers
  • Guides to DMD for teachers
  • Guides to DMD for babysitters

We’re also aware of the financial implications of having a child with DMD. So, we are also creating a:

  • Guide to Finances for DMD families