Prepare for Emergencies with the Duchenne UK App

March 8, 2022 2:26 pm

When Amanda’s son Tomos-William fell forward in his shower chair, she didn’t know that, because of his DMD, he was vulnerable to certain complications.
Boys with DMD are at risk of something called fat embolism syndrome. And they shouldn’t be given excess oxygen.
Staff treating Tomos didn’t know this. Tragically, he passed away in A&E just hours later.

Duchenne UK have launched a new app that aims to prevent the loss of precious lives like Tomos’ by helping parents/caregivers and medical practitioners to understand the special treatment people with DMD need in accidents and emergencies. 

The Duchenne UK In Case of Emergency App allows you to keep a profile of your child’s medical needs and emergency contacts, as well as general guidance on treating DMD patients. This can be sent to medical staff as a PDF document, in the event that they need emergency treatment.

The app has been developed as part of the DMD Care UK project, which aims to transform the standards of DMD care across the UK. 

We strongly encourage every DMD parent/caregiver and patient to download it and fill in their/their child’s profile, and update this profile regularly. We also advise you to print a copy of the PDF from the app and share it with your child’s school and other caregivers, if applicable. If you have any questions or problems accessing the app, please get in touch with Duchenne UK at

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