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Action Duchenne

Duchenne muscular dystrophy (DMD) is a rare genetic muscle wasting condition affecting around 2,500 people in the UK – the vast majority being male. The body does not produce a protein called dystrophin which is needed for muscle function.

Usually diagnosed around the age of 4 years, parents are told the devastating news that the life expectancy of their child is around 30 years – the worst news you could ever expect to hear. DMD severely affects quality of life; in time, a wheelchair is used full-time and eventually all of the muscles in the body stop working. Ventilation is needed to assist with breathing and death usually occurs from heart failure.

There are currently no cures or treatment options available to the entire population who have the condition – this is what our charity is working hard to change.

Established in 2001, at Action Duchenne we work tirelessly to deliver the overall vision of the charity - 'a world where lives are no longer limited by Duchenne muscular dystrophy' – through our three core objectives:

  • developing effective treatments for all
  • building a community
  • striving for a more inclusive society

 


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