Parents for parents
World Duchenne Organization (WDO), formerly known as United Parent Projects Muscular Dystrophy (UPPMD), is owned and managed by parent project organizations set up by parents of children with Duchenne Muscular Dystrophy (DMD) in many different countries all over the world. These national projects are run by parents for parents. WDO is managed by parents you have chosen to lead your national parent projects.
The organization came together after we realised that there was no sense in working in isolation from each other. We all share the same aims and dreams and they can be realised more efficiently using collective experiences and resources.
Care & information
The worldwide organization is dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to informing parents around the globe. There is a compelling need to ensure that wherever they are in the world, the children suffering from this disease 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 parents is contemporary and is based upon the latest 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 amongst researchers. It is also important to ensure that there is no unnecessary duplication of effort in this research.
From national to international
By joining together we have not set up a bureaucracy. WDO is a responsive organization led by parents. Only when organizations listen to parents’ concerns will parents have the faith to support their work. This is why we set up our national organizations, and now we have turned our ears to all the parents of the world.
WDO encourages Duchenne parents around the globe to set up their own national organizations which in turn are invited to join WDO in order to improve care and research in their own and other countries around the world.
Existing national organizations want to share their experience to empower the foundation of new national organizations.
Together we can change the world of Duchenne for the benefit of all.