Information for parents affected by Duchenne

Clinical trials – find out what a clinical trial is, and how you can get involved, plus access all the trials currently taking place here in the UK.

Care guidelines for families living with Duchenne.

Clinical recommendations on care.

The Lancet – the new Care Considerations for Duchenne (also called the Standards of Care) were published by the Centres for Disease Control (CDC) in The Lancet Neurology.  The family guide is based on the recommendations in these documents.

Part 1

Part 2

Part 3

Emergency support for Duchenne.

Mental Healthcare for Duchenne.

Respiratory care for Duchenne.

Adrenal insufficiency for Duchenne.

Puberty and testosterone for Duchenne.

Cardiac Care for Duchenne.

Bone Care for Duchenne.

Lots of great links to support families on mental health and wellbeing…