It’s World Duchenne Awareness Day!
Everybody around the world will raise awareness for Duchenne Muscular Dystrophy on September 7th. This year, the WDAD theme is Standards of Care. There is a compelling need to ensure that wherever they are in the world, individuals affected by this condition 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.
Thanks to the collaboration of four not-for-profit organizations — the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the World Duchenne Organisation UPPMD — a thoroughly updated and re-drafted Duchenne Family Guide is developed. This guide gives patients, families and caregivers access to the information necessary and enables them to work with their health care and support providers in ensuring optimal care.
In line with the Duchenne Family Guide, the World Duchenne Organization published 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 are published on the YouTube channel and can be found on the DMD-care website. 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.
Head over to www.worldduchenneday.org for more information about this day!
September is all about raising awareness and money for Duchenne Muscular Dystrophy. This year the money will be used for the implementation of the new Standards of Care, by translating and disseminating the new family guide and educational videos globally. You can contribute to this implementation by donating to World Duchenne Organization. Together we can make sure everybody has the access to these Standards of Care, also in less obvious languages and countries. Your donation is very much appreciated by all Duchenne boys and men!