New Study from the National Alliance for Caregiving: Rare Disease Caregiving in America

NA4Caregiving • 27 March 2018
Group Caregiving

The National Alliance for Caregiving , in partnership with Global Genes , released findings of an online study by Greenwald & Associates, conducted in late 2017, of 1,406 unpaid caregivers ages 18 and over living in the United States who provide care to a child or adult with a rare disease or condition. It is estimated that at least 25 million Americans currently have a rare disease or condition; the National Institutes of Health estimates that there are approximately 7,000 rare diseases. In this study, over 400 unique rare diseases and conditions were captured, with the most commonly mentioned rare conditions as follows: Cystic Fibrosis (9%), Pulmonary arterial hypertension (4%), Atypical hemolytic uremic syndrome (2%), Ehlers-Donlos syndromes (2%), Fabry disease (2%), Congenital central hypoventilation syndrome (2%), and PANDAS (2%).

Read the study and learn more about rare disease caregiving here: