Neuromuscular Resources

Here you can find infomation, links and documents regarding our service, including our Family File for boys with Duchenne Muscular Dystrophy.

Information for new patients

Glossary (downloadable pdf): aims to help parents understand medical language written in letters and reports.

Neuromuscular contact sheet: this is for parents to help them know who to contact and what they can help them with.

Family File (Duchenne Muscular Dystrophy)

The Family File is designed to provide you with information about Great Ormond Street Hospital and the care your son receives here. We hope you will also find it useful to store information that is useful to you and also information useful to help with communication between local services and Great Ormond Street Hospital and Great Ormond Street Hospital and local services e.g. last clinic letters, copies of results, names of key professionals. 

We are offering this file to families who have boys with Duchenne Muscular Dystrophy. All the documents contained in the file can also be downloaded from our website plus additional information that you might be interested in.

Core Content

Main Family File Documents

Vitamin D

Fracture Information 

Anaesthesia Information 

Neuromuscular information pathway 

Extra Documents

Surgery and DMD

DEXA scan Information

Echocardiogram Information

GOSH Passport

Around GOSH leaflet

What’s on for children around GOSH

A booklet to help parents talk to their children about DMD

Emergency steroid management plan 

Information for parents when their child with DMD needs a general anaesthetic.

Information from the Muscular Dystrophy Campaign for parents on healthy eating for children with Neuromuscular Conditions.

Practical Issues booklet

Transitions Guide (Muscular Dystrophy Campaign information)

Newly diagnosed with Duchenne: An introductory guide for families with a child newly diagnosed with Duchenne muscular dystrophy.

Education Pack

The education pack was developed for families of boys with DMD to help them navigate school entrance and understand the support available.

Education Pack Contents 

Education Pack Welcome 

Facts sheet 

Education MDC Leaflet 

Inclusive education (Muscular Dystrophy Campaign leaflet)

Special Educational Needs 

Learning and behavioural toolkit 

DMD - Learning and behaviour

Talking with children and their parents

Transition

In our procedures and treatments section is a page that explains about helping you teenager through transition and what to expect when your child comes to Great Ormond Street Hospital.

You can also download our leaflet: Transition for children and young people with neuromuscular disorders.

MDC Transition guide for young people with muscular dystrophy.

Other Resources

Under review