World Duchenne Organization (UPPMD)
World Duchenne Organization 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.
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 and other stakeholders in order to improve treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD and BMD).
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 dependents on us listening to our organizational partners, talking to families, and learning from our shared experiences. UPPMD 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.
The organisation will in particular devote itself to the realization of this task by way of the following goals:
- Promote research activities;
- Provide information to parents and clinicians on ongoing research, drug development, standards of care, patient advocacy;
WDO reached out to countries where limited information about Duchenne Muscular Dystrophy is available, and WDO facilitates the exchange of information about fundraising and lobbying activities among member organisations.
Website
Team
Mrs Elizabeth Vroom, DMD (Dental MD)
Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands and Chair and co-founder of the World Duchenne Organization/UPPMD. She is the mother of a son with DMD. With over 25 years of experience in Duchenne research and advocacy, she serves on several national and international advisory boards and is a patient expert for the European Medicines Agency. She is involved in several publications regarding Standards of Care and is co-author of a handbook on psychosocial aspects of DMD. She works with Kempenhaeghe on projects Neuropsychology of Duchenne. Elizabeth started initiatives to make better (re)use of data for DMD, setting up the Duchenne Data Platform, and raising awareness for FAIR data use. In the BIND project, she will be the dissemination project manager, and part of the Dissemination and Exploitation Board.
Mr Dimitrios Athanasiou, BA, MBA
Dimitrios Athanasiou is a board member of the World Duchenne Organization/UPPMD. He has over 25 years of experience in finance and business consulting.. He has a son with DMD and is an active international patient advocate in Duchenne and Rare Diseases. He serves as a board member of European Patient Forum and Greek Patient Association and contributes in several advisory boards and working parties for the EMA, providing the patient perspective when companies request regulatory advice or approval. In 2017 he was appointed by the European Commission to serve as PDCO member in the EMA representing EURORDIS and the rare disease community. In BIND he is responsible for project coordination, project performance and outreach to regulatory bodies and other stakeholders.
Ms Suzie-Ann Bakker
Suzie-Ann Bakker has been communications manager at the World Duchenne Organization/UPPMD since 2017. She is responsible for developing and carrying out communication activities in terms of patient advocacy, access and advancement of treatment, and quality of life for those affected by DMD and BMD. These strategies include building partnerships with member organisations, the design and management of international workshops and conferences, creating tools on effective communication and patient advocacy, and press and (social) media coverage. Suzie-Ann is a Cum Laude graduate from the University of Applied Science and holds a certificate in Communications and Multimedia Design. In the BIND project, she will build and deploy the communication outreach strategy in collaboration with the international Duchenne community.
