The XLH Community Guidebook is an educational resource created in partnership by the XLH Network and Kyowa Kirin for people living with X-linked hypophosphatemia (XLH) and their families. Developed “for XLHers, by XLHers,” it brings together clinical guidance, expert input, and personal experiences to help readers navigate the condition and everyday life. Its content is organized by age and topic, supporting children, teens, young adults, and adults at different points in their journey.

The guidebook covers XLH causes, symptoms, diagnosis, care teams, management, and ongoing monitoring. It also offers information on transitions between pediatric and adult care, work and school, finances and insurance, travel, aids and adaptations, emergency preparation, and physical and mental wellness. Readers can explore resources and a glossary, find support by life stage, and learn ways to prepare for appointments and advocate for care. The material is intended for education, not to replace professional medical advice, and encourages readers to discuss health concerns with a healthcare professional.