The XLH Network and Kyowa Kirin have launched the XLH Community Guidebook, a first-of-its-kind online resource for people living with X-linked hypophosphatemia, a rare genetic disease affecting bones and muscles. The Guidebook, available at www.XLHguidebook.com, was developed with input from patients, families, and experts to provide practical, evidence-based information tailored to each life stage from childhood through adulthood. It covers topics such as managing symptoms, coordinating care, and navigating transitions like school and work, and can be explored by topic or age group. While the initial launch is a joint effort, future editions will be managed solely by The XLH Network after the site transitions at the end of 2026.
Kyowa Kirin Co., Ltd.Kyowa Kirin co-launched a patient resource for XLH, which may increase awareness and diagnosis, potentially expanding the patient pool for its XLH treatment.