The World Duchenne Organization is a global umbrella organization of national patient organizations. We 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, and is based upon the latest research.’
It is equally important that the information available to parents is contemporary, truthful and is based upon the latest research.
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.
“WDO reaches out to countries where limited information about Duchenne and Becker muscular dystrophy is available, and facilitates the exchange of information about fundraising and lobbying activities among member organizations”
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