The World Duchenne Organization (WDO) is a global umbrella organization of national patient organizations. They are dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to inform parents and people living with the condition around the globe.
“There is a compelling need to ensure that wherever they are in the world, everyone diagnosed with Duchenne (and Becker) 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.” – Elizabeth Vroom, WDO Chair. “It is equally important that the information available to parents is contemporary, truthful and is based upon the latest research.”
When families are shouldering responsibility and work together around the globe, we can positively impact the future and lives of people living with Duchenne and Becker MD. With this, we can change the lives of everyone living with the disease. This includes the people affected, as well as the families.
It is important that the needs of the Duchenne families are the starting point for initiatives concerning them. There is a lot to win if we are using their experience and expertise.
In essence, only people with disabilities and diseases know what it means to have this condition. It means they will bring in a different perspective to caregivers, researchers or policymakers. Their questions and needs are based on their own experiences, interests and vision. This is the starting point of the strategy of the World Duchenne Organization.