Elizabeth Vroom
Chair, World Duchenne Organization (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 Organization (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 organization is also involved the development of exoskeletons and other technologies for Duchenne Muscular Dystrophy including the Duchenne Data Platform. The World Duchenne Organization (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 International) 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
Organisations
Duchenne Parent Project

Guided by the foundation president Elizabeth Vroom the Duchenne Parent Project in the Netherlands is an organization founded by parents of children wi …
Committees
TACT Extended Committee
Introduction to TACT Annamaria De Luca, as TACT chair, is leading this exciting initiative with the support of the TACT core, nominated committee memb …
TREAT-NMD Ethics Board – TEB
The TREAT-NMD Ethics Board identifies and examines ethical and social aspects of research taking place in the context of TREAT-NMD.

Country
