Health insurance literacy and health services access barriers in Niemann–Pick disease: the patient and caregiver voice

This US based qualitative PRO research study was completed in collaboration with the National Niemann-Pick Disease Foundation (NNPDF). The research was conducted to document the patient experience in Niemann-Pick as it relates to 1) insurance knowledge, 2) coverage, 3) as well as the burden experienced by patients and their families pertaining to the access of medications, services, and devices.