Elizabeth Vroom

Elizabeth VroomElizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995. This organisation has played an active role in drug development for Duchenne Muscular Dystophy.

Elizabeth is Chair and co-founder of the worldwide organisation UPPMD (United Parent Projects Muscular Dystrophy). 

She serves on several advisory boards regarding Care, Research, Ethics, Development of new medicines and Regulatory Issues in the Netherlands as well as international. She received the Biofarmind Innovation Award for her “creative and innovative activities in the field of drug development”. 

As President of the foundation ‘The Meeting’ she works on projects to optimize the role of patient organisations in drug development.

 

www.duchenne.nl

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases