51³Ô¹Ï

Red baloons
To commemorate the World Duchenne Awareness Day, people around the world release thousands of red balloons into the sky, and many families share photos of their balloons with their children's names on them.
Photo:Vahan / Adobe Stock

Duchenne muscular dystrophy

Duchenne Muscular Dystrophy (DMD) is a rare progressive disorder. People with DMD are missing muscle-protecting protein. This is due to a fault in the gene producing dystrophin. Muscles to become weaker over time until it affects the whole body. It is caused by a mutation on the X-chromosome, that is why mainly males are affected.

First walking becomes difficult, then other motor functions follow and ultimately it affects the ability to breathe as well as the function of the heart, as the heart is a muscle too. The missing protein also has a function in the brain, so learning- and behavior issues can also be part of the disease.

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 much earlier and some symptoms are already visible when the children are very young.

Duchenne Muscular Dystrophy is named after Dr Duchenne de Boulogne, who was one of the first to report the disease in detail in the 1860¡¯s.

World Duchenne Awareness Day logo

Raise your voice for Duchenne

This year¡¯s World Duchenne Awareness Day theme emphasizes the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with Duchenne muscular dystrophy (DMD) and other dystrophinopathies. We invite everyone, irrespective of their personal connection to Duchenne, to join in creating a more inclusive world where people living with disabilities are empowered to thrive. #WorldDuchenneAwarenessDay

World Duchenne Awareness Day

Recognizing that Duchenne muscular dystrophy is one of the most common pediatric genetic rare diseases, the General Assembly to designate 7 September, the current World Duchenne Awareness Day, as a 51³Ô¹Ï Day, to be observed every year beginning in 2024.

The Assembly encouraged stakeholders to actively raise awareness on the specific challenges and needs faced by individuals and families in the rare diseases community through national campaigns, educational programmes and information dissemination, with the goal of fostering greater understanding and empathy towards those affected by rare diseases and promoting global solidarity.

Did you know?

  • One in 5000 newborn boys in the world is affected by Duchenne Muscular Dystrophy.
  • With the current standards of care, people with Duchenne can live into their early 30s.
  • Currently, there is no cure available.

Duchenne - A 360 documentary

Resources

Resolution

  • World Duchenne Awareness Day ()

Campaign materials

Websites

Related observances

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