Dr Jarod Wong from the University of Glasgow together with a group of clinical experts from the UK, with support from Action Duchenne and Muscular Dystrophy UK developed the UK NorthStar network DMD-specific adult and transition bone health and management guidance. We are now delighted to announce the upcoming launch of three educational videos to explain these clinical guidance. The aim of these short-animated videos is to create a resource that informs and raises awareness in young adults (and their families) about the importance of bone health monitoring and management, and the recommendations of these guidance.
This project has directly followed on from the work undertaken by the University of Glasgow in developing the clinical guidance, and is co-funded by Action Duchenne and Muscular Dystrophy UK.
Three Key Topics Covered in Our New Animated Videos
These three short-animated videos communicate this information in an easily digestible form. The videos will be launched on the 12th January 2026 for each of the key areas that fall under the new recommendations:
- Monitoring of osteoporosis in adults with DMD
- Management of osteoporosis in adults with DMD following fracture
- Management of osteoporosis treatment during the transition period from paediatric to adult care
These animated videos were co-developed with expert input and guidance from Pathfinders Alliance, specifically adults with DMD and the wider Duchenne community, ensuring they are relevant to the community especially adults with DMD.
Why This Resource Is Important
Osteoporosis is very common in DMD patients due to the root cause of steroid intake and the significant weakness of the muscles. Until recently, comprehensive guidelines on bone health remained remarkably underdeveloped in international standards.
These new guidance and educational videos are an achievement, offering the necessary detailed guidance to improve care standards at all stages and ages of Duchenne muscular dystrophy.
A Collaborative Success
This successful project is the result of collaboration between the University of Glasgow (for the core standards development), Muscular Dystrophy UK and Action Duchenne (for the funding of these projects), and the Pathfinders Alliance (for the expert input and guidance).
Thanks to funding from Muscular Dystrophy UK and Action Duchenne, we now have guidance for management of bone health in adults with DMD, and with specific guidance during the transition from paediatric to adult care. The information videos explain the guidance in simple terms, and very grateful to the Pathfinders Neuromuscular Alliance for their input in co-developing these videos.
Dr. Jarod Wong – University of Glasgow
We are incredibly proud of the collaboration between Action Duchenne, MDUK, Pathfinders, and Dr. Jarod Wong’s team at the University of Glasgow (alongside leading clinical experts). By combining our resources, we have delivered vital bone health guidance for adults and those transitioning from paediatric care.
Action Duchenne Team
We encourage you to join our upcoming webinar where you can engage directly with the experts behind the content, ensuring you have a full understanding of the new guidance.
This patient community webinar is open to people living with DMD, their families and carers, and anyone interested in learning more about bone health in DMD.
New Bone Health Guidance, Video Launch & Q&A
Tuesday, January 13th, 2026 @ 6:30 – 7:30pm
Register: https://tinyurl.com/BoneHealthCommunityWebinar
Don’t miss this opportunity to understand these vital new resources for bone health in DMD.
