Action Duchenne is a phenomenal organization, and they really lead the way in supporting DMD families in the UK.  I can't say enough. - James Poysky (Parent)

As well as funding research into potential treatments and one day a cure, we also produce links to a range of resources to benefit the Duchenne community.

Helpful links

Advice & Guides for Adults living with Duchenne

Duchenne and Me app - developed by PTC to help patients and their families keep track of aspects of their health, routine and appointments

Guide for Families - this online guide takes you through the different topics or domains of the diagnosis and management of Duchenne muscular dystrophy.

Holidays and experiences - here you will find a list of organisations and trusts that offer support and advice for holidays, experiences and most of all fun!

Moving to adult services - what to expect

NICE guidelines - for care and support of adults receiving social care

Nutrition Guide - for adults produced by DMD Pathfinders

RCPCH Recognising Neuromuscular Disorders eLearning module

Sibs.co.uk - for brothers and sisters of people living with a disability

Together for Short Lives - transition checklist

Books

A guide to Duchenne muscular dystrophy - information and advice for teachers and parents. Edited by Action Duchenne founder, Janet Hoskin, this guide provides everything teachers and parents need to know to support a child or young person with Duchenne at school and home. Medical experts and practitioners working with children with Duchenne in schools give advice on learning and behavioural concerns, physical management and the transition to adulthood.

Avery - Avery is like other birds most of the time, but sometimes, feels a bit different. But Avery is not alone. Avery was written and illustrated by Marta Altes in association with Professor Lucy Raymond to help start conversations between children, families and doctors about rare disease and research.

Dan & DMD - A children's book on Duchenne muscular dystrophy

Dinosaur Mac - a story of a boy who truly knows how cool it is to exist. This picture book was created by a New Zealand Mum who has a son with Duchenne. It is used to start conversations with children at home and to share with school to give a little more understanding of Duchenne.

Michael Rosen's Sad Book - An honest account of a father’s grief for his son from the illustrious pairing of two former Children’s Laureates.

Books for young siblings

Special Brothers and Sisters helps siblings feel that they are not alone as they read 40 experiences of siblings aged from 3-18 told in their own words. The book includes tips for siblings on how to deal with some of the difficult issues they encounter in their lives, as well as highlighting the many positives of being a sibling. The book also has a glossary explaining different disabilities and medical conditions.

No Worries! Mindful Kids: An activity book for young people who sometimes feel anxious or stressed. This is a great book for children aged 7+ to help them express and manage their worries and other difficult feelings, and to help them feel calm.

(Action Duchenne) really do have a fantastic wealth of experience. For example, their information on education and learning was invaluable for us as parents, as well as for John's school. Knowing the problems boys with Duchenne can often face meant that we could anticipate John's educational needs. As a result, he is thriving at school. - James Ker-Lindsay (Parent)

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