To ensure everyone living with Duchenne and Becker Muscular Dystrophy has access to comprehensive multidisciplinary specialist teams
This petition had 2,458 supporters
In the 1960s, Duchenne Muscular Dystrophy was a condition with a life expectancy of 14. Improving standards of care has changed that.
With the best care, people living Duchenne and Becker Muscular Dystrophy can live longer, fuller lives. A recent audit in Scotland revealed the Duchenne population of over 18 year olds has almost tripled in the last ten years.
In Denmark, over 50% of the Duchenne population are over 21 years old.
However, in certain regions of the UK, the adult population is still only at 25%.
This is not down to incredible drugs which are only available in Denmark or that this condition has become any less severe. Children are still in wheelchairs by the time they are in their early teens.
The reason people are living longer in Denmark is because they have access to comprehensive multidisciplinary teams offering the best standards of care.
The UK has world leaders in this field and specialist centres providing fantastic care. These centres also provide the expertise and infrastructure for the numerous clinical trials taking place for Duchenne in the UK.
As the Duchenne population increases, the UK Government need to ensure resources aren't stretched. Specialist multidisciplinary teams must be fully funded to advance research into a treatment and give the Duchenne and Becker community the same prognosis that people who have access to Centres of Excellence are afforded.
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