Conducted by EURORDIS, this survey asks about patients participation in daily activities such as school, leisure, and work, as well as what you need to live life to the fullest. The goal is to advocate for people with rare diseases to access their rights and participate equally in society.
The survey is open to individuals living with a rare disease and their family members from any country and is available in 25 languages.
To make your voice heard and share your experience, please take 20 minutes to complete the survey by clicking here before September 8th.
The overall results will be shared with all survey respondents and communicated to patient organisations, policymakers, and the general public to drive real change for the rare disease community. Rare Barometer complies with the General Data Protection Regulation (GDPR).
For more information about the survey, click here.
If you have any questions while taking part in this survey, please contact rare.barometer@eurordis.org.
Thank you very much for your participation!
