There is a compelling need to ensure that wherever they are in the world, individuals affected by Duchenne Muscular Dystrophy can benefit from a standard of care that is informed by the best practice of the best clinicians from all over the world. It is equally important that the information available to families is understandable, contemporary, and based upon the latest research.
The Lancet published the first Care Considerations in 2010. Based on these publications a Guide for families was developed and released. Thanks to this document, parents could find more information and educate themselves about Duchenne Muscular Dystrophy. Due to the continuous effort of the Duchenne community, therapies and medical standards have drastically improved over the last years. Individuals affected by Duchenne are growing older and healthier, creating a need for improved and adjusted Standards of Care, including young adults and adults with DMD.
This year’s activities considering World Duchenne Awareness Day will include various conferences to update clinicians and other healthcare professionals, the publication of the updated Guide for Families, and the release of a series of educational videos, understandable for young people so they can become advocates of their own health. Education is the first step to implement the latest Standards of Care and make Duchenne dreams come true!
In line with the Duchenne Guide for families, the World Duchenne Organization publishes a series of educational videos, called explanimations to make Duchenne Care information accessible for as many people as possible and more specific for children as well. All twenty videos will be published on the YouTube channel of the World Duchenne Organization on World Duchenne Awareness Day September 7. Each video provides a clear explanation of a different aspect of Duchenne Muscular Dystrophy care. Each country can then make the video available in their own language by adding their translation in both voice and text.
For more information about the Duchenne Care Videos, please contact us on SOC@worldduchenne.org.