The new Rare Barometer survey on the impact of rare diseases on everyday life is now live!

By asking questions on your participation in daily activities, such as school, leisure and work, and on what you would need to live life at its fullest, we will be able to advocate for people with a rare disease to access their rights and participate in society on an equal basis with others.

This survey is open to people living with a rare disease and their family members from any country in the world. It is translated in 25 languages.

To make your voice heard and share your experience, we invite you to take 20 minutes to fill out the survey by clicking here, before 8 September: tiny.cc/RB_DailyLife

Overall results will be shared with everyone who responded to the survey and communicated to patient organisations, policy makers and the general public, in order to drive real change for the rare disease community. Rare Barometer complies with the General Data Protection Regulation (GDPR).

You can find more information on the survey here: tiny.cc/RB_DailyLife_Info

If you have any questions while taking part in this survey, you can contact rare.barometer@eurordis.org

Thank you very much in advance for your participation.