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Duchenne Care UK is a collaborative initiative between Duchenne UK and the John Walton Muscular Dystrophy Research Centre at Newcastle University, embedded in the UK North Star Network.
How Duchenne Care UK was developed
Working with leading clinicians, researchers, and patient experts, Duchenne Care UK is making sure the recommendations are based on expert opinion and evidence and are practical. It listens to families about what matters most to them.
Duchenne Care UK is here to make care better for everyone with Duchenne muscular dystrophy. Wherever you live. Whatever stage you are at.
Duchenne Care UK is funded by Duchenne UK, Joining Jack and Duchenne Research Fund.
About the programme
Across the UK, care for people with Duchenne muscular dystrophy is not always consistent. While some families have access to excellent multidisciplinary teams, others struggle to find the right specialists or therapies.
This isn’t because people don’t care - it’s because there hasn’t been a single, trusted source of guidance for the NHS that everyone can use.
Duchenne Care UK works to fix that - to make sure that every person with Duchenne, wherever they live, receives the same high standard of care.
Our vision for better care
Duchenne Care UK was created to bring clarity and confidence to families and professionals. It’s a set of care recommendations based on international best practice, adapted for the UK, and with an accompanying patient guide that is written in a way that’s practical and easy to understand.
The goal is simple: to make sure everyone knows what good care looks like and how to achieve it.
How it helps the community
Clear guidance
Families can see what care should look like at every stage of Duchenne, from diagnosis through adulthood.
Consistency
Clinicians across the UK can work from the same trusted recommendations, reducing variation and confusion.
Empowerment
When families know what to expect, they can ask the right questions and make informed decisions about treatment and support.
