The XLH Community Impact Survey, which was designed, fielded and analyzed by Engage Health on behalf of Kyowa Kirin and the XLH Network*, explores the rollercoaster that is a year in the life of XLHers. An XLHer may reach peaks by connecting with a supportive community or finding a physician who is knowledgeable about XLH. At other times, they may experience valleys when navigating mental health challenges or long drives to receive care.

*Engage Health designed, fielded, and conducted analysis of the survey with analytic and editorial support from SmithSolve and input from The XLH Network and Kyowa Kirin, Inc. The survey was fielded between November 2023 and February 2024.