Make your voice heard: Participate in the Rare Barometer Survey on the impact of living with a rare diseases on everyday life
Don’t miss the chance to participate in the Rare Barometer’s latest global survey, focusing on the impacts of living with a rare disease on everyday life! It is open until September 8th, 2024!
This survey aims to investigate the societal obstacles encountered by people living with a rare disease, from a human rights perspective. It is designed to capture a wide range of experiences, from participation in school and employment to the types of disabilities experienced and access to social rights. The survey, available in 25 languages, is a unique opportunity for people living with a rare disease and their family members to share their personal experiences and contribute to a broader understanding of the social barriers they face.
Developed with a committee of experts, including patient representatives, it will contribute to policy recommendations to enhance social participation and improve access to social rights for all people with rare diseases.
European results will be published on the EURORDIS and Rare Barometer websites, and shared with respondents, with the public and with decision makers to bring about change for the rare disease community. Patient organisations that are members of EURORDIS, as well as European Reference Networks, can have access to individualised results for their community by writing to rare.barometer@eurordis.org.
Take the survey!
It’s simple! The survey is available in 25 languages, and open to people living with a rare disease and their family members from any country in the world, using this link : tiny.cc/RB_DailyLife
Help us spread the word
The more people take this survey, the more accurate our results can be! The results will be shared with people who took the survey and decision-makers across Europe. Help us reach more people by using our communication toolkit : https://www.eurordis.org/?post_type=publications&p=140168, available in 25 languages .
Your participation and voice are vital in helping to shape policies that improve the lives of people living with rare diseases. Share your experiences today to help us advocate for a more inclusive society where everyone with a rare disease can live their life to its fullest potential!
For more information about the survey, click here : https://www.eurordis.org/rare-barometer-launches-survey-social-dimensions/. If you have any questions, please contact the Rare Barometer team at rare.barometer@eurordis.org.
