Action Duchenne

Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy. The charity, which is led by Duchenne families, aims to promote awareness of the condition, to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition. This is achieved by working in partnership with government agencies, NHS and care organisations, other charities, academic, scientific and research groups, and biotech companies worldwide.

Duchenne is a severe genetic muscle wasting disease for which there is no cure. The condition is usually diagnosed in early childhood and affects mainly boys with rare instances of girls developing the disease. Children are often in a wheelchair at the age of 10 and by their teenage years many are totally paralysed and suffer respiratory, heart and spinal problems.
Without treatment most of these young men die by their late teens or early 20s. Every year an average of 100 young men die of Duchenne and an equal amount of young boys are diagnosed with the disease, there are 2500 people living with Duchenne in the UK, all face short life expectancy.