Jessie Dubief

  • Rare Barometer Research Executive

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Jessie Dubief joined EURORDIS and the Rare Barometer Programme in August 2019 to coordinate the H-CARE Pilot Survey on rare disease patients' experience. The aim of this pilot was to understand how to best operationalise a robust patient feedback mechanism across the 6000+ rare diseases and across the 24 European Reference Networks. Jessie is now a Rare Barometer Research Executive and develops the H-CARE project while participating in other Rare Barometer surveys and projects.

She is specialised in multi-methodology and multilingual survey coordination, in statistics for social sciences and in multi-stakeholders consultations, both in the health sector and in urban planning. She started to develop this expertise while preparing her PhD and teaching survey design and statistics at the University of Lyon (Lyon, Saint-Etienne), and while participating in a research on past multi-methodology surveys.

Prior to working for EURORDIS, she has worked in French urban planning agencies (multi-stakeholder NGOs in charge of urban planning and monitoring) where she directed and conducted studies using first-hand and second-hand data on well-being and health, social policies, housing, economy, mobility and land use.

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.

 

Telephone: +33 6 81 35 81 41
Email: jessie.dubief@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