Jessie Dubief

  • Rare Barometer Research Executive

jessie-dubief.jpg

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 voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases