We are at an exciting time in the development of therapies for DMD with clinical trials in progress, or planned using several different approaches.  The future has never been brighter for DMD boys. - Professor Dame Kay E. Davies - Oxford Lab Visit

Founded in 2001 Action Duchenne was the first charity dedicated solely to improving the lives of all people affected by Duchenne and Becker muscular dystrophy. We have been at the forefront of the international community ever since, changing the face of Duchenne. 

What we have achieved

Research 

Making treatments available

  • Campaigning - we fought and won the battle to get Translarna, the first Duchenne treatment, available on the NHS

  • We set up the All Party Parliamentary Group for muscular dystrophy

Standards of care

  • Increased life expectancy - in 2001 the life expectancy of people living with Duchenne was limited at late teens. We have been instrumental in improving this by 10 years, as the average life expectancy in the UK is now late twenties 

  • Our Accident & Emergency pack has become a crucial tool for families, being used and downloaded upwards of 400 times per year.

  • We produce ground-breaking resources for families

Education and support

  • 600 people from the global Duchenne community come together at our International Conference to share hope, experience, support, information and power.

  • In 3 years, our transition project empowered 80 young people living with Duchenne to live better, more enriched lives.

Scope

  • International focussed

  • Collaboration with national and international partners

Help us change the future

I would recommend this amazing charity for any type of fund-raising to raise more awareness and  support to those families which have been diagnosed - Michelle Butler (Brighton Marathon runner)

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