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June 2017

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.

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