EURORDIS-Rare Diseases Europe is calling on people living with a rare or undiagnosed condition, as well as their families, to register for the Rare Barometer panel and take part in an upcoming international survey. This major initiative will explore what enables individuals to live well with a rare or undiagnosed condition, aiming to capture real-world experiences across Europe and beyond.
To kick off the project, EURORDIS will host a launch webinar on 11 September at 14:30 CEST. The session will introduce the survey and provide an outreach toolkit to support its wide dissemination.
The Rare Barometer survey will be open from 11 September to 16 November 2025, and is accessible in 25 languages, making it inclusive to a broad and diverse community. The data collected will be invaluable in informing policy, improving care, and shaping future research priorities for rare diseases.
More information: https://www.eurordis.org/rare-barometer/english/
About Rare Barometer
Rare Barometer is an initiative by EURORDIS that brings together the voices of people living with rare diseases through surveys and studies. The insights gained help influence healthcare policies and ensure that patients’ experiences are heard at national and international levels.