An insight into the participation of rare disease patients in research


Infographic - results from across Europe

An infographic showing the results of the survey on the participation of rare disease patients in research. The survey was carried out via Rare Barometer Voices, the EURORDIS survey initiative.

This infographic shows the collective results of all the 3213 respondents from 42 countries worldwide.


Read the full survey report

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases