Elizabeth Vroom is founder of the Duchenne Parent Project Netherlands (1995) and Chair and co-founder of the World Duchenne Organisation (UPPMD). She is the mother of a 32 year old son with Duchenne MD and orthodontist by training.

She is a board member of Eurordis, the European Rare Disease Organisation Involved in training other patient advocates/experts during the annual Eurordis Summerschool and the Duchenne Patient Academy. She serves on several advisory boards regarding Care, Research, Ethics, Development of new medicines and Regulatory Issues in the Netherlands as well as international. For example as chair of the TREAT-NMD Ethics Board, a global translational network for Muscle Disorders.

At the European Medicines Agency she is patient expert at Scientific Advice and member of the Patient Consumer Working Party. Elizabeth is a member of the Advisory Board of EMA’s Data Analysis and Real World Interrogation Network (DARWIN EU). She is a strong advocate for optimal (re)use of health data and took the initiative for projects and workshop regarding datacollection with patientorganisations in the lead, FAIRification of health data and development of PRO(M)s.

Elizabeth is involved in several publications regarding Standards of Care and drug development for Duchenne Muscular Dystrophy, concerning development of outcome measures, patient preferences, new born screening and the role of biomarkers. She is co-author of a handbook on psychosocial aspects of DMD. She participates in several EU funded projects, such as BIND, BEAMER (IMI), Trials@home (IMI) and Screen4Care as well as in the European Reference Network for Neuromuscular Disorders EURO-NMD.