Work

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

Year: 2025

Type: article

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.

Source: Pediatric Dermatology

DOI: 10.1111/pde.70047

Authors: Elika D. Javaheri, Vivian C. Iloabuchi, Elizabeth Dupuy, Nessa Aghazadeh Mohandesi

Institutions: Mayo Clinic in Arizona, Phoenix Children's Hospital, Mayo Clinic

Language: English

Topic: Skin and Cellular Biology Research

Subfield: Cell Biology

Field: Biochemistry, Genetics and Molecular Biology

Domain: Life Sciences

SDG: Good health and well-being

Open Access status: green

OpenAlex ID: W4414357550