Epidermolysis bullosa (EB) is a rare genetic disorder requiring intensive and costly care, often diagnosed in infancy when families are unprepared for the financial burden. We analyzed 160 U.S.-based crowdfunding campaigns… Click to show full abstract
Epidermolysis bullosa (EB) is a rare genetic disorder requiring intensive and costly care, often diagnosed in infancy when families are unprepared for the financial burden. We analyzed 160 U.S.-based crowdfunding campaigns for living EB patients, extracting data on demographics and financial needs. 33.8% of patients requested financial support for wound care supplies, 36.9% of patients requested support for travel costs, and 9.4% of patients requested support with special clothing or bedding. These findings highlight persistent, unresolved financial needs for EB-related care.
Journal Title: Pediatric dermatology
Year Published: 2025
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