Rare Barometer Survey on Living with a Rare or Undiagnosed Condition

Rare Barometer, the survey initiative of EURORDIS–Rare Diseases Europe, has launched a new global survey to explore what helps people live with a rare or undiagnosed condition, as well as their families.

The survey is open worldwide to anyone living with a rare or undiagnosed condition and their family members. It is available in 25 languages and takes about 25 minutes to complete.

This study investigates the supports and resources that enable people to manage daily stress, participate in work or education, and stay socially connected. The findings will provide valuable insights to guide advocacy and improve support tailored to real needs.

Results will be published in 2026 and shared with participants, policymakers, and the wider community. EURORDIS members and European Reference Networks (ERNs) will also have access to tailored results if at least 30 participants from their communities take part.