Did you know that World Duchenne Day is recognized each year on September 7th? This day is dedicated to spreading awareness about Duchenne muscular dystrophy (DMD), a rare disease. Patient Worthy partner CureDuchenne is recognizing this special day with new global initiatives intended to help amplify awareness.
CureDuchenne is helping spearhead advocacy for people living with DMD and the organization’s International Outreach Program is intended to educate healthcare providers around the world about Duchenne and train them in best practices related to diagnosis and treatment of the disorder. The group hosts events worldwide in underserved areas for local clinics and professionals that will ultimately serve to improve outcomes and quality of life for patients.
An example is the Physical and Occupational Therapy Professional Development program. So far, professionals have received training in a number of countries including Ukraine, Nepal, India, Canada, Australia, South Africa, Hungary, England, Russia, Italy, and South Africa. CureDuchenne is planning to expand its impact even more this year, with plans to operate in China and Uganda.
In Uganda, the first Duchenne Muscular Dystrophy Insight Conference was held in Kampala on August 22, co-hosted with the AYINZA Duchenne Support Center. Meanwhile, the Global Reconnections: 2024 International Conference will take place in China from September 21-22.
On World Duchenne Day itself, CureDuchenne will be working to spread awareness through community engagement and on social media. A number of related resources, graphics, and social media templates are available for use and can be found here.
To learn more about CureDuchenne, click here.
About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is a neuromuscular disease, and it is one of the more severe types of muscular dystrophy. It is characterized by progressive muscle weakness that usually begins around age four and worsens quickly. As an X-linked genetic disease, boys are mostly affected, with girls only occasionally displaying mild symptoms. The disease is caused by mutations of the dystrophin gene. Symptoms of Duchenne muscular dystrophy include falling, abnormal walking posture, eventual loss of walking ability, muscle fiber deformities, intellectual disability (not in all cases), enlargement of the tongue and calf muscles, skeletal deformities, muscle atrophy, heart abnormalities, and difficulty with breathing. Treatment includes a variety of medications and therapies that can help alleviate symptoms and slow disease progression. Lifespan is usually into the thirties or more with good care. Better treatments for this disease are urgently needed. To learn more about Duchenne muscular dystrophy, click here.
