World Duchenne Awareness Day

World Duchenne Awareness Day was established by the Duchenne World Organization to increase public knowledge about this condition, also known as Duchenne muscular dystrophy (DMD). Many people are still unfamiliar with the disease, which is caused by mutations in the dystrophin gene. As a result, individuals with DMD often have difficulty with learning, are prone to injuries, and have a characteristic gait. Daily life can be especially challenging, making it essential for the public to understand how to support and assist those affected.

History

Duchenne muscular dystrophy is named after Dr. Duchenne de Boulogne, the physician who first described the condition. Another common name for this disorder is DMD. Duchenne also observed a connection between muscular dystrophy and brain involvement. The exact cause, however, was not identified until a century later, when Dr. Eric Hoffman and Dr. Louis Kunkel discovered that mutations in the dystrophin gene are responsible for the disease.

Interesting Facts

• Initially, there were no treatment options for DMD, and families were left to care for patients at home.
• Non-invasive ventilation can be used to improve quality of life and prolong survival for some individuals with DMD.
• Duchenne muscular dystrophy is a serious genetic disease. Public awareness and education are critical for early diagnosis and support.
• World Duchenne Awareness Day is observed on September 7th, as the dystrophin gene contains 79 exons—hence the significance of the numbers 7 and 9.
• In DMD, important proteins are missing from both muscles and the brain, affecting movement and cognition.

How to Take Part

Take time to learn more about DMD, its causes, symptoms, and how to support those affected. Share information on social media to help spread awareness—your actions might make a difference for someone. Support patients and families by participating in online campaigns, displaying themed banners, or volunteering for organizations that help those living with DMD.

When is World Duchenne Awareness Day in 2025?

World Duchenne Awareness Day is observed on September 7 each year.

Observations