Register for Rare Barometer Voices: Make your voice heard!

Rare Barometer Voices is part of the new EURORDIS initiative, the Rare Barometer Programme.

March 22, 2016

EURORDIS, the European Organisation for Rare Diseases, has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease.

The Rare Barometer Programme has been created to make the rare disease patient voice stronger by ensuring that the patient perspective is entrenched in the advocacy work of EURORDIS. Evidence-based policy equals more effective policy. EURORDIS’ position at the heart of the policy and regulatory framework in Europe allows for the transformation of patient perspectives into policies and action.

Participants that register should live in one European country. After registration, participants will be requested to complete each new survey, always free to decide which surveys they wish to participate in. Responses are anonymous, confidential, and will not be used for commercial purposes. Results will be sorted according to country and ultimately disease and will be also available to survey respondents.

This survey panel creates an opportunity to collect patient experiences and expectations with validated methods in qualitative and quantitative data collection thanks to Rare Barometer Voices. Participate in this initiative!

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