JOIN THE SURVEY by the European Society for Rare Diseases
Make your voice heard: Complete the new Rare Barometer survey on the impact of rare diseases on everyday life
The new Rare Barometer survey on rare diseases is now available!
By asking you questions about your participation in everyday activities such as school, leisure and work, and what you need to live life to the fullest, we will be able to advocate for people with rare diseases to access their rights and participate in society on an equal basis with others.
This survey is open to people with rare diseases and their family members in all countries of the world. The survey has been translated into 25 languages.
To make your voice heard and share your experiences, we invite you to take 20 minutes to complete the survey by click here before September 8th.
Safety Information
The overall results of the survey will be shared with all survey respondents and will be shared with patient organizations, policymakers and the general public to create real change for people living with rare diseases.
Rare Barometer is compliant with the General Data Protection Regulation (GDPR).
You can find more information about this survey and Rare Barometer here: (ENGLISH) If you have any questions about this survey, rare.barometer@eurodis.org
Thank you very much in advance for your participation.