Our vision, in the long-term, is to offer everybody living with Duchenne the support and training they need to transition to an independent adult life which matches their aspirations. We know that this will be a large undertaking, so this project aims to take the first step and allow us to work with the young adults to formalise the training and support they want and need, and to find out what they are trying to achieve.

We want to work with clinics/hospices to find out exactly what support they are offering and how effective it is - to bring about a joined-up, all-encompassing support system.

The aim of this project is simple: to fully catalogue the needs and requirements of young people living with Duchenne and to start developing targeted support programmes to help everybody in the future.

This survey will help shape the project we are working on which is supported by Demelza, to help young people with Duchenne transition to adulthood.

Please add as much detail as you are able to.

This survey should take 7 minutes on average to complete

Thank you for your feedback!

Ravi Mehta
Project Engagement & Support Coordinator
20% of survey complete.