Jessie Dubief | Social Research Director
EURORDIS

Jessie Dubief is a dedicated and experienced 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 with expertise and vision. 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 delay, barriers to healthcare access, and unmet social needs. With a strategic mindset and a collaborative approach, Jessie excels in building bridges between patient communities, researchers, industry, and policymakers. Her ability to translate data into actionable strategies has made her a trusted voice in the rare disease ecosystem and a catalyst for change. As a speaker at the World Orphan Drug Congress 2025, Jessie will share insights from the Rare Barometer programme and her broader work at EURORDIS. Her session will explore how multi-stakeholder collaboration, driven by patient-led data, can unlock new opportunities to improve access, innovation, and equity in rare disease care. Join Jessie Dubief to learn how integrating patient-reported data into the orphan drug landscape is not only possible—but essential—for designing solutions that truly serve those most in need.