Duchenne muscular dystrophy
There are around 2,500 people in the UK living with Duchenne muscular dystrophy. Muscular Dystrophy UK is here for you, whether you’re a parent facing a new diagnosis, or an adult who has been living with the condition for some time.
There’s a lot happening in the world of research and clinical trials. We’re keen to accelerate progress in research into Duchenne muscular dystrophy, and remove any barriers to potential treatments. Read more, look out for updates and sign up to receive our regular emails.
Muscular Dystrophy UK ensures 100% of all funds from our Duchenne Research Breakthrough Fund goes directly to research and work to beat Duchenne muscular dystrophy. We are also the only charity with a team that gives direct support to families in clinic and provides information and advice in every part of the UK.
With the help of people living with Duchenne muscular dystrophy, we’ve put together some useful information, including tips and advice about day-to-day life with the condition. We also have other resources, which have been accredited by the Department of Health’s Information Standard. That means you can trust the information, it’s accurate and up-to-date.
As symptoms of Duchenne muscular dystrophy progress, you may need to have your home adapted or apply for benefits and services that are all new to you. Our advocacy team can help you get what you are entitled to, by giving you advice or acting on your behalf.
There’s also the Joseph Patrick Trust – Muscular Dystrophy UK’s welfare arm – that awards grants towards the cost of specialist equipment. You can find out more here.
Most importantly, we want you to know you’re not alone. If you’d like to meet other families living with Duchenne muscular dystrophy, just to talk, share experience or get some advice, we can put you in touch. Our helpline team is also here for you to offer support and advice. Do get in touch on our freephone helpline 0800 652 6352 or firstname.lastname@example.org
Scientists find a way to improve the efficiency of the technology
A new study at GOSH is looking for volunteers
Four UK sites are expected to open in the next few months
Golodirsen could potentially treat 8% of the Duchenne population