Survey: Juggling care and daily life: The balancing act of the rare disease community (2017)
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’, providing for the first time robust European data on the impact of rare diseases on everyday lives. The results from this survey show that: Rare diseases have a severe impact on everyday life; The time and…