Elizabeth Vroom

Chair, World Duchenne Organisation (UPPMD)

Netherlands

Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995 and Chair and co-founder of the World Duchenne Organisation (UPPMD). She is the mother of an adult son with Duchenne Muscular Dystrophy. Elizabeth is a member of the board of directors of EURORDIS.

She served as a member of the Health Council of the Netherlands. She is a member of the Patient Consumer Working Party at the European Medicines Agency and serves as a Patient Expert at EMA. Elizabeth is Chair of the Project Ethic Council.

Duchenne Parent Project Netherlands funded more than 200 research projects towards the development of viable treatments in Academia and industry around the globe. The organisation is also involved the development of exoskeletons and other technologies for Duchenne Muscular Dystrophy including the Duchenne Data Platform. The World Duchenne Organisation (UPPMD) represents the global community, plays a role in the dissemination of Standards of Care, is an eligible member of EMA. Member of EURORDIS and EPF, RDI (Rare Disease Internationa) and initiated and organises the World Duchenne Awareness Day.

Elizabeth contributed to more than 40 peer reviewed publications and organised workshops on Nutrition for DMD, Standards of Care, Outcome measures, Newborn screening, Reuse of Data (incl FAIR principles) and Transition to adulthood. She participated in ENMC workshops regarding DMD. She developed education materials on Standards of care and is co-author of a handbook of neuropsychology in Duchenne. She is or has been involved in several EU and IMI funded projects including: Asterix, AdaptSmart, Share4Rare, VisionDMD, Trials@Home, BIND, EURO-NMD-registry