Elizabeth Vroom

World Duchenne Organisation (UPPMD), Netherlands

e-mail: elizabeth.vroom@worldduchenne.org

www.worldduchenne.org

Elizabeth Vroom has been a Board member of EURORDIS since 2019.

Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995 and Chair and co-founder of the World Duchenne Organization (UPPMD). She is the mother of an adult son with Duchenne MD and is an orthodontist by training. She serves on several advisory boards regarding Care, Research, Ethics, Development of new medicines and Regulatory Issues in the Netherlands as well as internationally. For example as Chair of the Ethics Board and member of the Executive Committee of TREAT-NMD, a global translational network for Muscle Disorders.

As a volunteer for EURORDIS she is a member of the Faculty of the EURORDIS Open Academy, where she trains other patient advocates/experts during the annual EURORDIS Summer School. She is involved in several publications regarding Standards of Care and drug development for Duchenne Muscular Dystrophy, these include development of outcome measures, role of Biomarkers, trial design and better use of data. She is co-author of a handbook on psychosocial aspects of DMD. Elizabeth has participated in several EU funded projects, such as Asterix, Adapt Smart, RD-Connect and currently participates in Vision-DMD, Share4Rare and BIND.

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases