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May 2017

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


Report presenting in-depth results of the first European-wide survey on the impact of rare diseases on everyday life.

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

Available in English.

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