On September 7, the World Duchenne Organization will be hosting an online event where experts share their stories and experiences surrounding DMD/BMD and adult life. This virtual conference will take place during the World Duchenne Awareness Day.
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, we are globally advocating for young adults and adults with Duchenne to live their lives to the fullest.
World Duchenne Organization
For this reason on September 7, 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 we aim to inspire and empower young adults with Duchenne and their families to think and plan for the future.
Why September 7?
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.
What is 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.