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, 84% of respondents reported having an RD impacts the relationship with the family; 81% felt they were a burden to their family and friends.
"Rare diseases severely impact patients and their families in multiple aspects of their life, including their economic, personal and social domains. More social and economic support network for families and patients with rare diseases is needed in concerned geographies to alleviate their disease burden," says Siva Narayanan, CEO of Avant Health. For more information, please contact: Dr.
Siva Narayanan Avant Health Bethesda, MD , USA +1-301-799-8268 [email protected] Laura Mullen Rare Patient Voice Towson, MD , USA [email protected] About Avant Health Avant Health, LLC is a consulting firm and a CRO that advises life sciences industry, sharpening the client's commercial, scientific and evidence strategy formulation and execution, accelerating their path to success. Avant's approach integrates strategic insights with evidence generation tactics to reflect on patient's unmet needs and outcomes, and defend product value propositions. For more information, please visit us at: https://avant-health.
com . About Rare Patient Voice Rare Patient Voice, LLC provides patients and caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. RPV has over 145,000 patients and caregivers across more than 1,500 diseases, both rare and non-rare.
For more information, please visit us at www.rarepatientvoice.com .
SOURCE Avant Health.
