EURORDIS, the European Organisation for Rare Diseases is launching a new project called Rare Barometer Voices. This initiative aims to strengthen the voice of people affected by rare diseases in Europe.
Transform your opinions and experiences into facts and figures so that they can be 
shared with European level policy makers and other influential figures. In that way they will be made aware of the actions that need to be taken for the rare disease community in Europe and make changes that directly affect you. It will also help EURORDIS in their work to raise awareness about the impact of living with a rare disease.
To add your opinions and experiences register here: Rare Barometer Voices. After registration you will be send 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. Please note that the responses to the surveys are completely confidential, owned by EURORDIS, a non-profit organization, and will not be used for commercial purposes.