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 a range of resources to benefit the Duchenne community.

Accident & Emergency Pack - this pack contains information on different areas of care in the event that the person living with Duchenne is admitted to A&E.

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

Talking with your children about Duchenne muscular dystrophy - leaflet helping you to create communication strateties

DMD Carrier Leaflet - a ground-breaking leaflet providing support and guidance for female Carriers of the Duchenne gene.

Advice & Guides for Adults living with Duchenne

PPUK Learning and Behaviour Toolkit - please note, that, although the information is still pertinent, the email addresses are likely to have changed since publication. 

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!

Further reading

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.

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.

(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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