Duchenne and Bone Health: updated guidance for adults
12 January 2026
Bone health may often be 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. This happens 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, guidance on bone health for adults with Duchenne muscular dystrophy was not addressed in detail by international guidelines. This collaborative project changes that and provides a much-needed resource to improve care standards for adults 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 us 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:
The animated videos were developed with expert input and guidance from Pathfinders Neuromuscular Alliance and the wider Duchenne community.
“We are delighted to launch these videos alongside Action Duchenne and Pathfinders Neuromuscular Alliance. Bone health is important but often overlooked in adults with Duchenne muscular dystrophy. These videos provide accessible, expert guidance to help our community access the highest standard of care.”
Neeru Naik
Director of Services and Support, MDUK
We know how important it is to get the right support and we hope that these resources offer some useful guidance.
Join the webinar
Join our upcoming webinar on Tuesday 13 January, 6:30-7:30pm, 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.
