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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.
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
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative