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. Currently, Lenja is managing 9 out of the 24 ePAGs and is responsible for organising the content of the EURORDIS Leadership School on Healthcare and Research and is leading the ePAG Training & Education Working Group amongst other activities. As such, she is part of a team 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.

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 is based in Barcelona and speaks German, English, French and some Spanish.

Telephone: +34 936 06 84 67
Email: lenja.wiehe@eurordis.org

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases