Juggling care and daily life: The balancing act of the rare disease community

An infographic showing the results of the first Europe-wide survey on the impact of rare diseases on daily life. The survey was carried out via Rare Barometer Voices, the EURORDIS survey initiative.

The data from this survey has been organised into infographics showing the results from across Europe, by country and by disease grouping.

Read the full survey report

Infographic - results from across Europe

This infographic shows the collective results of all the 3071 respondents from 42 countries across Europe.

Infographic - country-specific results

The results of this survey have been broken down per country and translated into the relevant language.

The results are available for the following countries:









Infographic - disease grouping specific results

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