Organization

Mission
World Duchenne Organization is a worldwide organization 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.

Vision
WDO 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.

Purpose
Worldwide collaboration between Duchenne Parent organizations in order to improve treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD and BMD).

The organization will in particular devote itself to the realization of this task by way of the following goals:

  1. Promote research activities;
  2. Provide information to parents and clinicians on ongoing research, drug development, standards of care, patient advocacy; WDO reaches out to countries where limited information about Duchenne Muscular Dystrophy is available, and facilitates the exchange of information about fundraising and lobbying activities among member organizations.

Articles of association
WDO is a not-for-profit organization under Dutch law. Please find articles of association here.

Funding
WDO income is the result of fundraising activities and membership fees. We are not sponsored by industry. Please find annual income statements here:

Member
WDO is a member of Eurordis, and an eligible member of the European Medicines Agency.

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