Dear Rare Barometer participants,
You were recently invited to tell us how your rare disease impacts your everyday life.
If you have not yet responded, please click here to answer this short survey.
It should take no more than 20 minutes to complete and closes on 8 September 2024.
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.
The link that appears in this email is unique and can only be used once. Please do not share it with anyone. To share the survey with your friends and family, please share this link instead: tiny.cc/RB_DailyLife
The more people will take the survey, the stronger our voice will be!
By asking questions about your participation in daily activities such as school, leisure and work, and what you would need to live life to 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.
You will be informed about the results of the survey following your participation and we will also share these results with decision-makers in order to bring about change for the rare disease community.
Please note:
If you are not interested in this survey, please click on this link. You will stay in the Rare Barometer database but will not be contacted about this survey anymore.
You can find more information about the survey and about Rare Barometer here: eurordis.org/voices
If you have any questions while taking part in this survey, you can contact rare.barometer@
Thank you in advance for your participation.
Kind regards,
The Rare Barometer Team