An insight into the participation of rare disease patients in research


An infographic showing the results of the survey on the participation of rare disease patients in research. The data from this survey have been organised into infographics showing the results from across Europe in multiple languages and by disease grouping.The survey was carried out via Rare Barometer Voices, the EURORDIS survey initiative.

Read the full survey report

Infographic - results from across Europe

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

Infographic results - disease grouping


The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative 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