United Parent Projects Muscular Dystrophy (UPPMD) is owned and managed by parent project organisations set up by parents of children with Duchenne Muscular Dystrophy in many different countries all over the world. These national projects are run by parents for parents. UPPMD is managed by parents you have chosen to lead your national parent projects.
The organisation 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.
The worldwide organisation 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.
By joining together we have not set up a bureaucracy. UPPMD is a responsive organisation led by parents. Only when organisations listen to parents’ concerns will parents have the faith to support their work. This is why we set up our national organisations, and now we have turned our ears to all the parents of the world.
UPPMD encourages Duchenne parents around the globe to set up their own national organisations which in turn are invited to join UPPMD in order to improve care and research in their own and other countries around the world.
Existing national organisations want to share their experience to empower the foundation of new national organisations.
Together we can change the world of Duchenne for the benefit of all.