This report This report (87 pages) presents the results of a survey on the experiences of caregivers supporting a child or adult with a rare disease or condition. Topics covered include caregiver demographics, information sources, use of local services, and the impact of the role on caregiver stress, wellness and other aspects of life.
The report draws on quantitative data from 1,406 caregivers aged 18 and over who reported providing unpaid support in the past year to someone with a rare disease. The data were collected online in fall 2017.
An infographic summarizing certain findings is also available.
