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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases