Who we are.

My Duchenne is for Duchenne patients and caregivers to have all their health information at their fingertips. Self-managing extensive data can be difficult and at times overwhelming. My Duchenne works to take these stresses away so families can focus on the more important things.

 
 
 
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“I can not believe how much information I keep in my head and in heavy folders and on post it notes, I'm surprised my brain hasn’t exploded, i’ve needed this tool for so long!”

A Duchenne Parent 

 
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Our Mission

Are you frustrated carrying around heavy files with all your child’s medical history? Do you wish there was an easy, seamless way to share this data with emergency doctors, teachers and childminders? Have you ever worried about travelling with your child and having to communicate their disease in different languages?

My Duchenne is the new groundbreaking app built for the Duchenne community by the Duchenne community. The app makes it easy for you to access, own and control health information that belongs to you.

 
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Our Values


Accessibility: An accessible app that allows users to easily store and reach their medical information at any time, anywhere.

Organisation: An organised way to allow users to track medical information over time in a meaningful way

Shareability: An easy approach allowing the sharing of medical information with health aides.

2+

Years in the making

It’s been a journey to download and input what we all hold in our heads into a powerful and intuitive user experience

 

60+

Countries using backpack Health

Over 60 countries across the globe are already represented by users of the Backpack Health app

 
 

80+

years of Duchenne experience

A team with a combined total of 80+ years of Duchenne experience brought together to deliver one powerful tool.

 
 
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Our Story

My Duchenne was built based on the core belief that life for caregivers to a child or young person with Duchenne muscular dystrophy (DMD) should be made as easy as possible. It has been created for the Duchenne community by the Duchenne community.

The physical, emotional and financial strain of Duchenne is significant. On top of this, parents often manage huge binders with their child’s medical information. We need to offer them a tool that relieves this stressor, enabling them to communicate with medical professionals across the world and track data patterns in a meaningful way. This is where My Duchenne fits in. It is our duty for the Duchenne community to continually improve the way we meet the individual needs of each caregiver and child, and give them the freedom they had before the diagnosis.

 
 

Get Involved

It’s simple and easy to get involved. Download from the App Store or Google Play and start entering all your or your Childs data. From supplements and medications, blood test results to North Star Ambulatory Assessments. Anything and everything is available to you and circle of caregivers. And if it’s not just get in touch. We’ll add it in.

MyDuchenne Backpack starts with you.