Three-fourths of rare disease patients and caregivers report that rare disease related economic burden impacted their family finances, and 27% report spending over 10,000 EUR /USD out of pocket to manage the rare disease. Majority report severe impact on family relationships. BETHESDA, Md.
, Aug. 12, 2024 /PRNewswire/ -- A new survey of 800 rare disease (RD) patients and caregivers from the U.S.
, United Kingdom (UK), Spain and Germany were conducted by Avant Health and Rare Patient Voice between February and April 2024 . Overall, 77% of respondents reported that RD-related economic burden impacted their family finances, and 27% reported spending over 10,000 EUR /USD out-of-pocket to manage the RD, and these varied by country. These results were part of a survey asking RD patient/caregiver opinions about their humanistic and economic burden, access to healthcare, and perspectives on living with a RD.
The participants were from four countries: 100 from Germany , 168 from Spain , 252 from the UK and 280 from the U.S., with a median age of 44 years; 85% were female; 78% were RD patients, 15% were caregivers of a RD patient, and 7% represented both patient and caregiver.
When asked to rank the impact of living with a RD or caring for a RD patient, a majority (71%) of respondents reported severe impact on their quality of life. While 70% of these stakeholders felt excluded from social events and 82% reported that having RD prevented spending time with family and friends. Overall, 8.