Health-related quality of life among adults with diverse rare disorders

Kathleen R. Bogart and Veronica L. Irvin; Orphanet Journal of Rare Diseases 201712:177 doi:10.1186/s13023-017-0730-1

Twenty-five to 30 million Americans live with a rare disease (RD) and share challenges unique to RD. The majority of research on RDs has focused on etiology, treatment and care, while the limited health-related quality of life (HRQL) research has been restricted to single RDs, small samples, or non-validated measures. This study reports HRQL among adults with diverse RDs, and compares their scores to those of the U.S. population and people with common chronic health conditions.


 Health-related quality of life among adults with diverse rare disorders