Take the new Rare Barometer Voices survey on rare disease patients’ experience of treatments and make your voice heard
Who can respond to the Rare Barometer Voices survey?
This global survey is open to anyone from any country in the world who is living with a rare disease, as well their family members and carers. The survey is available in 23 different languages and all responses are anonymous.
It takes 10 minutes to complete the survey online and the more people who respond and share their experiences, the more powerful our voice will be!
If you are not already registered to participate in the Rare Barometer Voices program, you will be asked to complete a short registration form before you begin the survey. The survey closes on 30 April.
How will the results of the survey be used?
The survey responses will be used to develop insights into the experience of people living with a rare disease in relation to treatments. We will be able to generate an overview of rare disease patients’ experience of treatments at a global level as well as breakdown the results by geography, disease group, gender and age.
The results will be shared with patient organisations, policy makers and the general public. The findings will be used by Eurodis in their advocacy work to drive real change for people living with rare diseases. The key insights will also be shared with all respondents via email and social media and the full report and associated infographic will be made available on the Rare Barometer Voices website.
Why Rare Barometer Voices?
Rare Barometer Voices is the EURORDIS-Rare Diseases Europe survey initiative that brings together over 8,000 rare disease patients, family members and carers who share their experiences and opinions on the issues that matter to the rare disease community. Rare Barometer Voices was created to systematically collect patients’ opinions on transversal topics and introduce them into the policy and decision-making process. The objective of the programme is to transform patients’ and families’ opinions and experiences into facts and figures that can be shared with a wider public and policymakers.
Eurodis would like to thank you in advance for your participation. For more information, visit Eurodis
Rare Revolution Editor