Knowledge
Information that helps you navigate today and plan for tomorrow
Our Knowledge stream brings together leading experts and community voices to share the latest developments, practical guidance and insights relevant to life with Duchenne.
From emerging research and treatments to everyday challenges and future planning, these sessions are designed to help individuals and families feel informed, confident and better equipped for the journey ahead.
Day 1: Understanding Duchenne Care and Support
Duchenne, Clearly Explained: What It Is and What It Means
Ever wished someone could explain Duchenne in a way that actually makes sense? This session breaks down the science behind Duchenne into clear, understandable language, helping you better understand how the condition affects the body.
Duchenne Carriers: Understanding the Genetics and Supporting Mental Wellbeing
Being a carrier is about far more than genetics. Learn about health considerations and the emotional impact that can come with carrier status. Most importantly, hear practical advice on looking after your own wellbeing while supporting others.
Understanding the Duchenne Standards of Care: What Matters
Knowing what care should be available can make all the difference. This session will help you understand what good care looks like and give you the confidence to advocate for the support you or your loved one needs.
Coordinating Care in Adulthood: Making the Multidisciplinary Model Work
As care needs increase, navigating multiple specialists can feel overwhelming. Learn practical strategies to coordinate appointments and communicate across services.
Day 2: Research, Treatment and Living Well
Research Without the Hype: What’s Really Changing in Duchenne?
Headlines can create hope, confusion and sometimes unrealistic expectations. This session cuts through the noise, helping you understand what is genuinely changing in Duchenne research.
Clinical Trial Updates 2026: Ongoing and Upcoming Trials
Want to know what’s happening now in Duchenne research? Hear the latest updates on current and upcoming clinical trials, where to find trusted information and what opportunities may be on the horizon.
Navigating Steroid Therapy: A Joint Approach to Steroid Management
Steroid decisions can be challenging for families. Learn about the benefits, risks and the importance of working with your healthcare team to make informed decisions that are right for you.
Beyond Childhood: Transition, Independence and Quality of Life
Growing up with Duchenne brings new opportunities and new challenges. This session focuses on achieving greater independence, navigating adult services and maintaining quality of life so that individuals can thrive at every stage of adulthood.
Knowledge can change the way you navigate Duchenne. Leave these sessions with a better understanding of the condition, greater confidence advocating for care, clearer insight into research and treatments and practical strategies that can make a real difference to everyday life.
