An online program about brain involvement in Duchenne and Becker muscular dystrophy will launch on World Duchenne Awareness Day. This initiative is organized by the World Duchenne Organization and will take place on September 7.
The theme of this year’s World Duchenne Awareness Day is ‘Duchenne and the Brain’. Because of this, the World Duchenne Organization organizes a global livestream directed towards families, clinicians, researchers, teachers, basically everybody involved and interested in Duchenne care and research. The live stream will be launched with Spanish subtitles.
Program
- Stories of Duchenne families dealing with the burden related to brain involvement in Duchenne;
- Update on the current state of knowledge about the comorbidities;
- The need for early and adequate screening and support.
About the theme
This theme was chosen to raise much needed awareness on brain comorbidities such as autism, ADD and ADHD and learning difficulties in people affected by rare disease Duchenne and Becker muscular dystrophy. This crucial aspect was already recognized when the condition was first described in 1861 by Duchenne de Boulogne. International research to create standardized assessment and treatment options is currently being worked on.
