Health teams need to have the right information on someone’s condition to treat them in an emergency and avoid dangerous or even life-threatening complications. This is why it’s so important that everyone carries the Alert card.
Ravi Mehta, who has Duchenne muscular dystrophy
If you or a member of your family has Duchenne muscular dystrophy, the right specialist healthcare can make a significant difference to the quality and length of life. There are lots of helpful resources to help make sure you receive the right care.
We also have information for healthcare professionals who provide care to people living with Duchenne muscular dystrophy.
Key information currently available
In case of an emergency
- The Duchenne muscular dystrophy alert card explains vital and specific issues that affect people with Duchenne muscular dystrophy. It gives families the security of knowing they can easily make sure emergency healthcare professionals have the right information.
Please order your alert card by emailing firstname.lastname@example.org or calling the Freephone helpline on 0800 652 6352.
Information on Duchenne
- Duchenne muscular dystrophy factsheet. Our information factsheet gives a more detailed overview of the condition.
- Duchenne muscular dystrophy: changing needs.
- A guide for parents: Duchenne muscular dystrophy.
- An information app on Duchenne muscular dystrophy
- The neuromuscular Centres of Excellence show an extremely high standard of clinical care and comprehensive diagnostic services.
- The diagnosis and management of Duchenne muscular dystrophy is a guide for families. These care guidelines explain internationally agreed standards about the medical care of Duchenne muscular dystrophy.
- We have created a video featuring health professionals, individuals and families affected by Duchenne muscular dystrophy talking about the specialist care people with the condition need.
For health professionals
- The North Star Project for children aims to optimise the care of young patients with Duchenne muscular dystrophy. It does this by achieving and practicing consensus on best clinical management, using agreed assessment and treatment protocols, no matter which clinical centre they attend.
- The North Star Adult Network is made up of expert neuromuscular consultants, allied health professionals, people with Duchenne muscular dystrophy and Muscular Dystrophy UK. This new group is working together to improve the standards of care and support available to adults across the UK.
- Diagnosis and management of Duchenne muscular dystrophy. This published research paper outlines care guidelines which are the result of an international consensus on the medical care of Duchenne muscular dystrophy.
- Our research news keeps you up-to-date with the latest news on research topics relating to Duchenne muscular dystrophy.
- Information about patient registries and clinical trials, including those relating to Duchenne muscular dystrophy, is available online.
Get in touch
If you would like to order a copy of any listed publications, or talk to someone about any of the information on this page, please contact our Information and Support Team:
- Phone our free helpline: 0800 652 6352 (Monday, Wednesday, Thursday and Friday 9am-4pm, Tuesday 8:30am to 6pm)
- Email us: email@example.com.