Support when your child is diagnosed with DMD

Duchenne UK was founded by DMD parents, so we know how tough it is to hear this news. We’ve produced a set of resources that we hope will help you cope and plan your child's care.

Duchenne UK Family Folder open book and cover

The Duchenne UK Family Folder

Our family folder for newly diagnosed families 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.

You can request a printed copy of the folder using our form below. You can also download a digital copy of each chapter below.

If you are a healthcare professional who would like to distribute copies to families, please get in touch with us at [email protected].

Please note that we can only post within the UK.

 

Order a Family Folder

Name
If you are not a parent/caregiver or relative, please contact us at [email protected] We can only post folders within the UK - if you live outside the UK, you can download the folder above.
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If your child is currently taking steroids, you may like to order a steroid alert wristband. It is designed to alert people that the wearer is steroid dependent and may need to be given steroids if they become unwell. You can find out more about this at https://dmdcareuk.org/information-leaflets
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What do to when your child is diagnosed

A message from our founders

Duchenne UK was founded by two mothers whose sons were diagnosed with DMD in 2011. They understand the pain and heartbreak that a DMD diagnosis brings, and are here for other families going through the same experience.

Emily and Alex have written a letter to newly diagnosed parents and families, which we hope will bring you comfort and strength at this difficult time.

Read the letter

Find out more

Young boy with doctor having a heart check up in hospital Young boy with doctor having a heart check up in hospital

Understanding DMD

Learn more about DMD, its causes, symptoms and stages and available treatments.

What is DMD What is DMD
Duchenne UK Steroid wristbands Duchenne UK Steroid wristbands

Prepare for emergencies

People with DMD need special treatment in emergencies. Find out how you can be prepared.

Emergency support Emergency support
CEO Emily Crossley speaking at Duchenne UK Patient Information Day in 2019 CEO Emily Crossley speaking at Duchenne UK Patient Information Day in 2019

Parent Information Days

Attend a Parent Information Day to find out about the latest research and connect with other parents.

Attend an Information Day Attend an Information Day