making muscle wasting history

Research has shown conclusively that young people living with Duchenne that have access to multi disciplinary expert care are living longer and have an improved quality of life.

Here for the first time Treat NMD have published family friendly Standards of Care for Duchenne. At the heart of recommended provision are Centres of Excellence that provide young people with access to an expert neuromuscular clinician and a range of Consultants with Duchenne experience.

Action Duchenne strongly advises you to download and print the family friendly version and take a copy to the next meeting with your consultant.

Check to see if your Muscle Centre meets the Standards set by these agreed Standards.

New drugs and medicines are under clinical development and this will add to the complexity of managing the severe muscle wasting and other complications associated with Duchenne.

Action Duchenne remains committed to developing new drugs and making sure we have expert clinical management at all stages including those young men now living longer lives.