Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS surveys and studies.
EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe.
Rare Barometer Voices is a EURORDIS initiative that aims to make the voice of rare disease patients stronger. The objective is to transform your opinions and experiences about topics that directly affect you into figures and facts that can be shared with a wider public.
The programme was created because we believe that the views of the rare disease community need to be communicated as a diverse but unified voice to bring about change. By sharing your opinions and experiences you will help to achieve this goal.
The results of our studies and surveys are communicated to:
Rare Barometer Voices is an interactive project. After registering in Rare Barometer Voices:
You will be sent an email to request your participation in each new survey related to subjects that concern you. You are free to decide which surveys you want to participate in.
Next step – fill out the survey! The survey data will then be collated and analysed to provide data on a European and also national level, as well as according to specific diseases.
Finally, you will be sent the results of the survey by email so that you can get insight into what other people in similar situations to you feel and think.