What is the “Rare Barometer” survey?

The “Rare Barometer” survey has been designed by EURORDIS to identify areas that may be less accessible to people living with a rare disease in daily life. The study asks questions about respondents’ experiences at school, leisure and work to identify areas where more support may be needed.

Who can take the “Rare Barometer” survey?

Any person who is living with a rare disease and their close family members are welcome to take part in the survey.

What is the purpose of the “Rare Barometer” survey?

The goal of the “Rare Barometer” survey is to understand how daily activities, such as attending school or work, may be less accessible to people living with a rare disease. This will:

• Enable EURORDIS to understand how they can support people with a rare disease in their daily activities
• Give EURORDIS an insight into what people living with a rare disease need to live life to the full
• Allow EURORDIS to be more effective advocates for people living with rare conditions worldwide

If you want to learn more about the survey, please click on the links to be taken to the survey, which is available in 25 languages. Please note that the closing date for responses is the 8 September.