7 September 2026
World Duchenne Awareness Day: Save Our Sons joins global call for better access
Access to care and support can change lives for families living with Duchenne muscular dystrophy.
Save Our Sons Duchenne Foundation works to improve outcomes for people living with Duchenne and Becker muscular dystrophy.
This year’s World Duchenne Awareness Day calls attention to the barriers faced by people living with Duchenne, and the importance of ensuring families can access the right care, information and support throughout their journey.
This year’s theme, “Access Changes Lives”, highlights the need for fair access to diagnosis, specialist care, clinical trials, therapies, assistive technology, and support.
Save Our Sons Founder Elie Eid said access to the right services and opportunities could make a significant difference to quality of life for people living with Duchenne and their families.
“When people with Duchenne can access the care, information and opportunities they need, it can give them greater choice and independence, while helping families feel more informed and supported,” Mr Eid said.
Duchenne is a rare genetic condition that causes muscles to progressively weaken, eventually affecting movement, breathing and heart function. It primarily affects boys and has a significant impact on the whole family. There currently is no cure.
For people living with Duchenne, access can mean seeing the right specialists, receiving reliable information, accessing emerging therapies and research, using assistive technology, and being able to participate fully in education, employment and community life.
Save Our Sons Duchenne Foundation works to improve outcomes for people living with Duchenne and Becker muscular dystrophy through advocacy, education, support, research and access to specialised care.
World Duchenne Awareness Day, held 7 September 2026, provides an opportunity to ensure the experiences of the Duchenne community are understood, while calling for continued action to remove barriers that can limit access.
“For the Duchenne community, awareness matters because access changes lives,” Mr Eid said.