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

 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases