Jessie Dubief joined EURORDIS and the Rare Barometer Programme in 2019 to coordinate the H-CARE project, which aims at capturing the experience of people living with rare diseases with their specialised care, and use it within European Reference Networks. Since 2022, she has been leading the Rare Barometer Programme, coordinating the design and the analysis of surveys aiming at gathering the lived experience and the opinion of people living with rare diseases and their close family members worldwide.
Jessie is specialised in multi-methodology and multilingual survey coordination, statistics for social sciences and multi-stakeholders’ consultations. She started to develop this expertise while preparing for her PhD and teaching survey design and statistics at the University of Lyon (Lyon, Saint-Etienne), and while participating in research on past multi-methodology surveys.
Jessie holds two master’s degrees in Social Science, with a specialty in Sociology and in International Urban Planning. A French and Swiss national, she speaks French and English, and she understands Spanish.