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

 
 
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