Policy and campaigning

World Duchenne Awareness Day to take place 7 September 2021

September 7 is World Duchenne Awareness Day. On this day, the World Duchenne Organization raises awareness for Duchenne and Becker muscular dystrophy (DMD/BMD) around the globe. This year's theme will be ‘Adult Life & Duchenne’.

Adult Life & Duchenne 

Over the past decades, life expectancy of individuals affected by Duchenne MD has increased significantly, and adults with Duchenne are not an exception anymore. Adult life with Duchenne comes with new challenges and opportunities as well as with new medical issues. This World Duchenne Awareness Day, the World Duchenne Organization are globally advocating for young adults and adults with Duchenne to live their lives to the fullest.

On 7th September, the World Duchenne Organization will be hosting an online event where experts share their stories and experiences surrounding DMD/BMD and adult life. With this they aim to inspire and empower young adults with Duchenne and their families to think and plan for the future.

Why 7th September? 

The DMD gene, encoding for the dystrophin protein, is the longest human gene known. It consists of 79 exons. This is why 7/9 is the date for World Duchenne Awareness Day.

For more information about World Duchenne Organization, visit the WDO website or find out more about World Duchenne Awareness Day here.

Published on 29 July 2021

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Categories Policy and campaigning
Note for editors

About World Duchenne Organization

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.

Press inquiries:
Nicoletta Madia: [email protected]
Suzie-Ann Bakker: [email protected]

About DMD/BMD

• Duchenne and Becker MD are rare genetic diseases defined by muscle weakness.
• Muscles get progressively weaker over time
• 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 require care from different medical specialists throughout their lives.