XLH Network and Kyowa Kirin Launch XLH Community Guidebook

Kyowa Kirin, Inc., a subsidiary of Kyowa Kirin Co. Ltd., and The XLH Network, a non-profit patient advocacy organization, have announced the launch of the XLH Community Guidebook. This comprehensive online resource aims to provide tailored information and support for individuals and their caregivers managing X-linked hypophosphatemia (XLH), a rare, progressive genetic disease affecting bones and muscles in both children and adults.

The Guidebook was developed collaboratively with patients, families, and experts, offering practical advice and evidence-based resources for each stage of the XLH journey. It addresses community-identified needs and insights, drawing from sources like the XLH Community Impact Survey to help navigate everyday challenges.

Content covers understanding and managing XLH symptoms, coordinating specialized medical and dental care, promoting physical and emotional well-being, and planning for life transitions such as school and work. The resource intends to help prevent care gaps over time and empower individuals with information.

Susan Faitos, Executive Director of The XLH Network, stated the Guidebook was created "with the community, for the community" and will be updated as knowledge expands. Eslie Dennis, Global Head of Medical Affairs at Kyowa Kirin Co., Ltd., highlighted the collaborative effort and expressed hope that the Guidebook will make individuals feel more informed, supported, and connected. The Guidebook is available at www.XLHguidebook.com.