Survey launched on what helps people live with a rare or undiagnosed condition
This survey is an initiative of EURORDIS-Rare Diseases Europe
Rare Barometer, the survey initiative of EURORDIS-Rare Diseases Europe, has today launched a new global survey exploring what helps people live with a rare or undiagnosed condition, as well as their families.
The survey is open to those living with a rare or undiagnosed condition and their family members worldwide, and is available in 25 languages.
This new Rare Barometer study investigates the supports and resources that enable people to handle daily stress, participate in work or education, and stay socially connected. By gathering first-hand experiences, it will provide valuable insights into what most helps people and their families manage everyday life.
Every answer makes a difference! Take the survey
The results of the survey will be published in 2026 and shared with participants, policymakers, and the wider public. Read more about this initiative HERE.