About us

Community focused, community led 

World Duchenne Organization (WDO), formerly known as United Parent Projects Muscular Dystrophy (UPPMD), is owned and managed by patient advocacy organizations – organizations set up by parents of children with Duchenne muscular dystrophy (Duchenne) or Becker muscular dystrophy (Becker) in many different countries all over the world.

Collaboration

The organization came together in the spirit of collaboration and with the hope of limiting fragmentation within the global Duchenne community. WDO brings together families and organizations from around the world   so that we can utilize our collective experiences and resources to end Duchenne.

Care & information

World Duchenne Organization is dedicated to finding a cure and viable treatments for Duchenne, to promoting good standards of care, and to educating parents around the globe. There is a compelling need to ensure that wherever they are in the world, the people living with Duchenne can benefit from a standard of care that is informed by the best clinical practices from all over the world. It is equally important that the information available to parents is up-to-date and based on the latest research.

Research

There are many challenges facing our community – in particular there is a need to advance scientific research by collectively funding such research, and by promoting the sharing of information and learnings from studies amongst researchers. It is also important to ensure that there is no unnecessary duplication of effort in this research.

From national to international

WDO is a responsive organization led by Duchenne families. We understand that our success is dependent on us listening to our organizational partners, talking to families, and learning from our shared experiences. WDO encourages Duchenne families to work together within their own counties to form unified organizations and networks and then join the WDO in order to improve care and research globally.

We believe that it will take the strength of the entire global community to end Duchenne. Together, we can move mountains.

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