In 2018, the WDAD theme was 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.
This year’s activities included conferences to update clinicians and other healthcare professionals, the publication of the updated DMD 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!
Guide for Families
Thanks to the collaboration of four not-for-profit organizations – the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, Treat-NMD and the World Duchenne Organization – a thoroughly updated and re-drafted Duchenne Guide for Families is developed. This guide gives parents, families and caregivers access to the information necessary and enables them to work with their health care and support provides in ensuring optimal care.
In line with the Duchenne Guide for Families, WDO 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. Each video provides a clear explanation of a different aspect of DMD care. For more info about the videos in the different ages/phases and about how to create the videos in your own language, please visit our special DMD Care website.