Over 3,000 rare disease voices across Europe responded to the survey.
The survey was conducted via Rare Barometer Voices (a community of over 5,000 people living with a rare disease who regularly participate in EURORDIS surveys) in 23 languages across 42 countries.
The survey was in the area of rare diseases co-funded by the European Commission’s Employment and Social Innovation (EaSI) Programme, led by the Spanish Ministry of Health and Social Services and with EURORDIS as a partner.
The results
The survey results show that rare diseases have a serious impact on everyday life for over 80% of patients and families, and that the time burden of daily care management and care coordination for rare disease patients and families is substantial:
- 42% of respondentsspend more than 2 hours a day on care for their disease.
- 62% of carersreported they spend more than 2 hours per day on tasks related to the disease while nearly a third spend more than 6 hours a day on care for a patient.
- At least64% of carers are women.
- 38% of respondents declare that they were absent from work due to health-related problems for over 30 days in the last 12 months.
- 41%of patients and carers responded they need special leave at work but could not obtain it.
The survey also covered other issues surrounding the impact of rare diseases on daily life, including coordination of care, mental health, employment and economic impact.
60% of the over 3,000 respondents that answered the survey are rare disease patients and the remainder family members of patients.
Rare diseases pose real challenges for the person affected as well as their family or those who assume caregiving responsibilities.
The results of this survey clearly show the severe care and time burden on people living with a rare disease and their carers.