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

A leaflet on the results of the first Rare Barometer Voices survey on the social impact of rare diseases on daily life.


Over 3,000 rare disease voices across Europe responded to the survey ‘Juggling care and daily life: The balancing act of the rare disease community’, which was conducted via Rare Barometer Voices and in the scope of the EU-funded INNOVCare project, focused on promoting person-centred care for rare diseases.




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