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
Neuromuscular information pathway
Extra Documents
What’s on for children around GOSH
A booklet to help parents talk to their children about DMD
Download Emergency steroid management plan information sheet (641.46 KB)
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.
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.
Inclusive education (Muscular Dystrophy Campaign leaflet)
Learning and behavioural toolkit
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