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 may have already received a folder from your neuromuscular consultant. If not, each family in the UK can request a printed copy of the folder below. You can also download a PDF of each chapter below.

Order a Family Folder

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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

Our resources hub

Duchenne UK Steroid wristbands Duchenne UK Steroid wristbands

Prepare for emergencies with DMD

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

COVID-19 and DMD guidance

Many in the DMD community are concerned about coronavirus. Read the latest guidance from neuromuscular experts.

Support in the pandemic Support in the pandemic