Searching for a cure, Improving lives

What is Duchenne Muscular Dystrophy?



Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (around 2500 people have DMD in the UK).

Because the Duchenne gene is found on the X-chromosome, it primarily affects boys with less than 1% of those with Duchenne being female. However, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. Life expectancy is improving as standards of care and knowledge about Duchenne increases , and some men live into their 30’s and 40’s

Becker muscular dystrophy, which is less severe than Duchenne, occurs when dystrophin is manufactured, but not in the normal form or amount. Because of this disparity in the severity of the different forms of these disorders, we will refer primarily to Duchenne throughout this site.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone.

Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

Action Duchenne is a UK charity founded in 2001 to fund research to find a cure or viable treatments for Duchenne Muscular Dystrophy. Since 2001 the charity has grown and continues to fund cutting edge research while campaigning for the best standards of care to be made available for all living with Duchenne. We also run education and transition projects for young people living with DMD and our community.

If your child has been diagnosed with Duchenne please get in contact. We have a range of useful information for parents, your child can be added to the DMD registry to ensure they can be put forward for any suitable clinical trials , and we may be able to answer your questions or put you in touch with people that can help.

A huge amount of information on the condition and how it should be managed can be found in the Family Guide which is available to view and download here :  .





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Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

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FDA new approach would reduce number of patients treated with placebo

December 11th, 2017

The U.S. Food and Drug Administration (FDA) has published its recommendation for a new approach

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Results announced from survey ‘Juggling care and daily life’

December 11th, 2017

The 17th October 2017 was an important date for the rare disease community.  The highlights of the

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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