Understanding the Needs and Financial Challenges of Patients With Epidermolysis Bullosa: Insights From Donation Requests

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.