Rare Barometer Survey: Living with a Rare or Undiagnosed Condition
The survey aims to better understand the experiences of people living with rare conditions by exploring questions on coping with daily stress, the types of support relied upon, and how individuals manage to learn, work, and contribute to their communities. The insights collected will help advocate for tailored solutions that enable people with rare conditions and their families to live life to the fullest.
The new Rare Barometer survey is open until 14 December 2025 and aims to better understand what helps people live with a rare or undiagnosed condition.
The survey is available in 25 languages and takes about 20 minutes to complete.
For more information about the survey, visit the dedicated webpage
If you have any questions while taking part, you can contact: rare.barometer@eurordis.org
Thank you for helping to make your voice heard and supporting this important initiative!
Funded by the European Union
“Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.”
