Can you hear us now? The impact of health-care utilization by rare disease patients in the United States

PurposeThe vast majority of rare diseases (RDs) are complex, disabling, and life-threatening conditions with a genetic origin. RD patients face significant health challenges and limited treatments, yet the extent of their impact within health care is not well known. One direct method to gauge the disease burden of RDs is their overall cost and utilization within health-care systems.MethodsThe 2016 Healthcare Cost and Utilization Project (HCUP)...