United Parent Projects Muscular Dystrophy is a worldwide organisation 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, truthful and is based upon the latest research.
UPPMD believes that when parents shoulder responsibility and work together around the globe they will have a greater impact on the future and lives of the patients suffering from this disease. Not only change the lives of their own children but of all patients. 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 their experience and expertise is utilized. 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.