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Rare Barometer to launch new survey in September

July 2025
Rare Barometer survey launch webinar text in white over purple backgroun with an image of parent and child on the right

From 11 September to 16 November, EURORDIS-Rare Diseases Europe will open a new Rare Barometer survey focused on what helps people live with a rare or undiagnosed condition, as well as their families. The survey, conducted via the Rare Barometer programme, will be accessible worldwide in 25 languages.  

It will offer valuable insights into how people living with a rare or undiagnosed condition handle daily stress, the types of support they count on, and how they manage everyday life: from studying or working to staying socially connected. 

This survey will help EURORDIS advocate for more tailored and effective support for people living with a rare or undiagnosed condition and their families. 

The results will be published in 2026 and shared with participants, policymakers, and the wider public. EURORDIS members and European Reference Networks that secure at least 30 participants from their communities will also receive individualised results

Join our upcoming webinar

To mark this launch, EURORDIS will host a webinar on the same day, 11 September, at 14:30 CEST, open to all members of the rare disease community and beyond. The session will present the goals of the survey and explore its key themes. 

Attendees will also learn how to share the survey using a communications toolkit, which will be made available in 25 languages after the webinar.