Background
XLH* is rare, and little is known about its impact on a person throughout life. Unmet needs of the U.S. XLH community extend beyond the burden of symptoms to accessing care, navigating care transitions and day to day activities, ability to work, etc.; data to illustrate the impact of these needs are lacking. To address this gap, Kyowa Kirin and The XLH Network retained Engage Health to design, field and analyze a study to quantify and deepen understanding of the current experience of adult and child XLHers in the U.S.