Lenja Wiehe

  • Patient Engagement Manager Healthcare – ERN & Healthcare / European Patient Advocacy Groups

Lenja Wiehe

Lenja Wiehe joined EURORDIS in 2014 as part of the resource development team. Since 2016, she has managed the 24 European Patient Advocacy Groups (ePAGs) that were set up by EURORDIS to ensure a meaningful patient advocates’ engagement across all European Reference Networks (ERNs) activities.  As such, Lenja is responsible for engaging patient organisations in the development, programming and evaluation of ERNs.

Prior to joining EURORDIS, Lenja was involved in several community health projects and gained experience in health systems management working with the German International Cooperation (GIZ) and the Emergency Humanitarian Action Unit of the World Health Organization in Indonesia, the Monitoring & Evaluation Unit of UN Women in India and the Women and Health Alliance International (WAHA) in France. In addition, she has worked as a freelance journalist for various film production agencies in France and Germany.

Lenja holds a Master in Southeast Asian Studies and Political Science from the University of Bonn and a Master of Public Health from the EHESP French School of Public Health.

Lenja speaks German, English and French.

Telephone: + 34 932 20 44 01
Email: lenja.wiehe@eurordis.org

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