Jessie Dubief is the Social Research Director at EURORDIS-Rare Diseases Europe, a unique non-profit alliance of over 1,000 rare disease patient organisations. With a strong background in social sciences and a passion for patient advocacy, Jessie plays a pivotal role in advancing evidence-based policies that reflect the real-world experiences of people living with rare diseases.

At the heart of her work is Rare Barometer, an innovative EURORDIS programme that she leads. This programme gathers the voices of thousands of rare disease patients and their families from over 100 countries, transforming their lived experiences into robust data that can inform policy and practice at national and international levels. By harnessing scientifically rigorous methodologies, Rare Barometer captures the collective voice of the rare disease community—amplifying it where it matters most: in research, policymaking, and healthcare system reform.

Jessie’s leadership in Rare Barometer has been instrumental in bringing visibility to often-overlooked challenges such as diagnostic delays and how they could be reduced through newborn screening programmes, barriers to healthcare access, and unmet social needs.

Dubief briefed National Press Foundation fellows in November 2025: ‘Living Rare’ and ‘Rare Barometer’ Show Power in Numbers. Check out the Rare Disease Reporting Guide.