Duchenne muscular dystrophy is a rare genetic muscle-wasting disease. The progressive condition is usually diagnosed in early childhood and mainly affects boys. In the UK, approximately 100 cases are diagnosed each year, and there are approximately 2,500 people living with the condition at any time.
People living with Duchenne experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. The heart and breathing muscles are affected and most will require a ventilator and 24 hour care in their twenties; life expectancy is around 30 years in the UK.
There is no cure and treatment options are limited.
Duchenne can occur unexpectedly in any family with a third of cases occurring in families with no previous history of the condition.
About Action Duchenne
Formed in 2001, Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy.
Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns and we have made some incredible achievements.
We have a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. We are working to deliver the vision through our three core objectives: Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.
