The new Rare Barometer survey on what helps you live with a rare or undiagnosed condition is now live!

We aim to better understand your experience by asking questions on how you cope with daily stress, which support you can rely on, or how you manage to learn, work, and contribute to your community while living with a rare or undiagnosed condition. This will help us advocate for tailored solutions for people with rare conditions and their families to live life to the fullest.

This survey is open to all the people living with a rare or undiagnosed condition and their family members from any country in the world, 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 14 December: tiny.cc/RB-MH

Overall results will be shared with survey participants, patient organisations, policy makers and the general public, in order to drive real change for people living with rare and undiagnosed conditions. Rare Barometer complies with the General Data Protection Regulation (GDPR).

You can find more information on the survey here: tiny.cc/RB-MH-info

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