Duchenne and Bone Health: updated guidance
Bone health is often overlooked in adults living with Duchenne muscular dystrophy –
but it’s essential. To help explain its importance, we’re sharing some guidance in the
form of short, animated videos.

Why is this new guidance important?
Osteoporosis is very common in adults living with Duchenne muscular dystrophy as
long-term steroid use can make bones fragile. Understanding this and knowing what
good care looks like will help you advocate for yourself or your child.
Until recently, comprehensive guidelines on bone health remained underdeveloped
by international standards. This collaborative project changes that and provides a
much-needed resource to improve care standards for people living with Duchenne
muscular dystrophy.

How did it come about?
Together with a group of clinical experts from across the UK, Dr Jarod Wong from
the University of Glasgow developed the UK NorthStar network guidance for bone
health and management for adults living with Duchenne muscular dystrophy.
Following this work, three animated videos have been created to help explain the
clinical guidance, supported by Muscular Dystrophy UK and Action Duchenne.

What topics are covered?
The aim of these short, animated videos is to communicate the guidance and explain
the importance of bone health monitoring and management in an easily digestible
form. There are three animations, covering the key areas within the new
recommendations:
– Monitoring osteoporosis – what checks should happen and when
– Managing osteoporosis – medical treatment available for weak bones
– Managing osteoporosis during transition to adult care – what review should be
undertaken

The animated videos were developed with expert input and guidance from
Pathfinders Neuromuscular Alliance and the wider Duchenne community.

We know how important it is to get the right support and we hope that these
resources offer some useful guidance.

Check out the videos below or visit our Youtube channel.

Join the Webinar to find out more:
Join our upcoming webinar and engage directly with the experts behind the content,
ensuring you have a full understanding of the new guidance.
This webinar is open to people living with Duchenne muscular dystrophy, their
families and carers, and anyone interested in learning more about bone health in
Duchenne.

New Bone Health Guidance, Video Launch & Q&A
Tuesday, 13 January 2026, 6:30–7:30pm
Register: https://tinyurl.com/BoneHealthCommunityWebinar