Pediatr Dermatol. 2025 Sep 19. doi: 10.1111/pde.70047. Online ahead of print.
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.
PMID:40970358 | DOI:10.1111/pde.70047
