You can select text on your screen to have it read aloud

Rare diseases barometer

European initiative Eurordis
Barometer Eurordis

The European Organization for rare diseases, Eurordis, has developed the rare diseases barometer in many languages.Rare Barometer Voices is a community of people who deal with rare diseases and who want to participate in surveys and investigations by EURORDIS-Rare Diseases Europe.

EURORDIS, the European Organisation for rare Diseases, is a non-profit, patients-driven alliance of patient organisations. EURORDIS represents the voice of about thirty million people living in Europe with a rare disease.

We have set up this programme because we think that in order to achieve change, the different views of people with rare diseases must be unified in one voice. By sharing your opinions and experiences, you help us achieve this objective.

The results of our investigations and surveys are passed on to:

  1. Patient organisations, so that they can use these results to raise awareness among policymakers in their country;
  2. Policymakers at European and international level and other influential figures so that they are made aware of actions to be undertaken for the community of rare diseases in Europe and internationally;
  3. The public, including healthcare providers and physicians, to inform them, via our website, about rare diseases.

More information