World Duchenne Organization

Duchenne and Becker MD are rare genetic diseases defined by muscle weakness. Muscles are progressively getting weaker over time and this ultimately affects the ability to breathe as well as the function of the heart, as the heart is a muscle too. People born with Duchenne and Becker will require care from different medical specialists throughout their lives. In most countries, the average age of diagnosis of DMD is above 4 years of age and the diagnostic delay around 2.5 years. Parents see symptoms much earlier and some symptoms are already visible when the children are very young. Lack of awareness of DMD in (first line) health care professionals seeing these children is a major factor that contributes to this delay. With the current standards of care, people with Duchenne can live into their early 30s and beyond. However, still a certain percentage of boys with DMD die in their late teens, mainly due to cardiac complications. The average life expectancy of Becker patients is somewhere between 40 and 50 years. However, with clinical care continuing to improve, as well as clinical trials, research and new therapies, the quality and quantity of life with Duchenne and Becker are enhanced each year. The World Duchenne Organization is a worldwide organization dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to inform parents around the globe. With 49 member patient organizations over the world, we globally advocate for DMD / BMD individuals to live their best lives.