Guidance for DMD patients and families

Standards of care affect the length and quality of life for people living with Duchenne muscular dystrophy (DMD). DMD patients, caregivers and families should be informed and involved in their own care and treatment, and work together with healthcare professionals for the best outcomes.

Download the booklets below and watch our webinars for more information on the recommended standards of care. If you'd like to be involved in reviewing future resources, express an interest in becoming a DMD Care UK patient representative.

For more information and support for families, visit Duchenne UK's website.

Get support from Duchenne UK

DMD patient information guides

The booklets below are based on DMD Care UK's clinical recommendations for different areas of care. They are designed to help DMD parents, families and patients understand the care they should receive.

Respiratory care

Understand how to keep the respiratory system healthy for as long as possible through early monitoring and ongoing management.

Download respiratory care guidance

Adrenal insufficiency

Learn how to manage adrenal insufficiency, a side effect of steroids where the body cannot produce enough cortisol during illness and accidents.

Download adrenal insufficiency guidance

Puberty & testosterone

Understand how steroid medicines can cause boys' puberty to be delayed, and how this can be managed with testosterone treatment.

Download puberty and testosterone guidance

Cardiac care

Understand how regular heart checks and preventative medication are essential for protecting the heart in DMD patients and female carriers.

Download cardiac care guidance

Bone care

Learn how bone health is monitored, how to help prevent and treat osteoporosis, and how to manage vertebral fractures.

Download bone care guidance

Physiotherapy and occupational therapy care

Our guidance about the best standards of physiotherapy and occupational therapy care needed at different stages of DMD.

Download physiotherapy and occupational therapy guidance

Patient webinars

Vamorolone for Duchenne muscular dystrophy a summary of evidence for families

Prepare for emergencies

Learn what to do in an emergencies, including broken bones, gastro-intestinal problems, COVID-19 and minor-severe illnesses

Steroid stress dosing

Learn what you need to do with steroids in an accident, emergency or illness, including how to give a hydrocortisone injection

Adrenal, bone & puberty

Understand the best care for bones, delayed puberty, and managing adrenal insufficiency