Supporting the DMD community

DMD Care UK is a nationwide project, funded by Duchenne UK, Joining Jack and the Duchenne Research Fund, to ensure every person living with Duchenne in the UK has access to the best care.

The project will work with expert clinicians and the patient community to agree, communicate and implement DMD standards of care recommendations for the UK. These will be based on the international recommendations published in The Lancet Neurology in 2018.

We are working together to make sure that every person living with Duchenne muscular dystrophy in the UK has access to the best care. No matter where they live.

Find out more on the DMD Care UK website

We partner with special education needs experts Decipha to provide free educational support for children and young people with Duchenne muscular dystrophy. Decipha offer a range of services to help children with their education and social development.

Find out more and get support from Decipha

Technology is constantly developing, yet the tools available to help disabled people live independent lives are outdated. We want to harness innovation to give people living with muscle-wasting conditions like DMD a better quality of life.

We are funding cutting-edge research and product design in this area. This includes:

• Developing a new wheelchair for young people with the latest design and technology features, in partnership with Whizz-Kidz and the University of Edinburgh
• Developing wearable, assistive clothing (the Solid Suit) that could help people with DMD with movement

We provide a range of information and resources to help families cope with a DMD diagnosis and get the best care and support for their child.

This includes:

• Parent Information Days: our regular information days keep parents and caregivers informed of the latest research developments and guidance on caring for children and young people with DMD
• Duchenne UK Family Folders: our Family Folders are comprehensive guides for families on caring for a child with DMD and getting the most out of life, from the point of diagnosis into adulthood
• Webinars: We run regular webinars for families on everything from COVID-19, nutrition and exercise, to the latest DMD research