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.

https://www.treat-nmd.org/resources-and-support/care-guides/dmd-care/

Clinical recommendations on care.

https://dmdcareuk.org/clinical-recommendations

https://dmdcareuk.org/

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 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30024-3/abstract

Part 2 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30025-5/abstract

Part 3 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30026-7/abstract

Emergency support for Duchenne.

https://dmdcareuk.org/emergency-support

Mental Healthcare for Duchenne.

https://dmdcareuk.org/mental-health-support

Respiratory care for Duchenne.

https://res.cloudinary.com/studio-republic/images/v1706528182/DMDCare-UK-Respiratory-care-guide/DMDCare-UK-Respiratory-care-guide.pdf?_i=AA

Adrenal insufficiency for Duchenne.

https://www.duchenneuk.org/wp-content/uploads/2022/07/DMD-Care-Adrenal-insufficiency-leaflet-digital-updated-July-22.pdf

Puberty and testosterone for Duchenne.