Even the most organised person has to use a mixture of calendars, spreadsheets and post-it notes.


Patients and carers living with Duchenne try to capture information to help monitor the progression of their condition and understand how different interventions effect themselves or their child. This is often inconsistent and cumbersome to manage with most information filed away on paper.

MyDuchenne has teamed up with Digi.me an innovative IT/Data company who are inspired by Duchenne and are helping to kick-start the development and building of an application to help manage and monitor the condition more easily and intuitively. MyDuchenne is delighted to assist but wants to ensure this is a community effort and 'your' application. 


The Solution

The idea is to build an app which helps individuals to better track their or their child's condition and be able to visualise this information using simple timelines and graphs. How did this appointment’s six minute walk test compare with last time? or How much has my child grown since our last appointment?


The Project

The app is being developed as we speak and will be available for testing in April 2018 (first on Android, then on iOS).

We are looking for individuals and businesses who can get involved with the app whether it is just to use the app and feedback to us or get more actively involved by actually building upon it – any active techies out there willing to add features then give us a shout!

Get Involved

Name *
country code then number digits without the first zero
About You *
your relationship to Duchenne
Mobile Platform *
How would you like to get involved?
Provide any comments or details about how you'd like to get involved.