The XLH Network and Kyowa Kirin Launch the XLH Community Guidebook to Help People Navigate Lifelong Journey with XLH
New online resource brings together practical information, community perspectives, and expert guidance tailored to people with XLH across ages and life stages
PRINCETON, N.J., June 23, 2026 (GLOBE NEWSWIRE) -- Kyowa Kirin, Inc., a wholly owned subsidiary of Kyowa Kirin Co. Ltd., and The XLH Network, a non-profit patient advocacy organization, today announced the launch of the XLH Community Guidebook, a comprehensive online resource for patients and their caregivers living with X-linked hypophosphatemia (XLH), a rare, progressive, genetic disease that impacts the bones and muscles in both children and adults.1
People affected by XLH, their families, and experts helped develop the Guidebook as a first-of-its-kind, community-informed resource that provides information tailored for each stage of the XLH journey, from childhood through adulthood. Through practical tips and evidence-based resources, the Guidebook aims to support people navigating the everyday realities of living with XLH. It is available at www.XLHguidebook.com.
“XLH can affect multiple generations within families, underscoring the need for guidance, connection, and support at every stage of life,” said Susan Faitos, Executive Director of The XLH Network. “Created with the community, for the community, we designed this Guidebook to stay useful, relevant, and responsive to the real experiences and needs of people living with XLH. We will review and update the Guidebook over time, as knowledge expands, care evolves, and our community continues to learn from one another.”
While the XLH Community Guidebook began as a joint effort between the XLH Network and Kyowa Kirin, future editions will be managed solely by the XLH Network following the site's transition at the end of 2026.
A Comprehensive Solution to a Longstanding Need
Until now, no single resource has addressed the real-world challenges of living with XLH by providing individuals with actionable strategies for coordinating care, moving through key transitions, and engaging with the broader XLH community. The Guidebook addresses community-identified needs and insights, including learnings from the XLH Community Impact Survey. XLHers can explore the Guidebook by topic or age group, making it a practical resource they can return to as their needs evolve over time.
The Guidebook content spans topics such as understanding and managing XLH symptoms, coordinating specialized medical and dental care, fostering physical and emotional well-being, and planning for key transitions for care and life, including school and work, among others. Together, these resources may help prevent care gaps over time.
“The voices, experiences, and needs of people living with XLH and the families who support them every day shaped the XLH Community Guidebook,” said Eslie Dennis, Global Head of Medical Affairs, Kyowa Kirin Co., Ltd. “We’re grateful for our partnership with The XLH Network and for the contributions of community members and clinical experts who helped bring this Guidebook to life. Through this effort we hope people feel more informed, supported, and connected throughout their journey.”
About X-linked hypophosphatemia
X-linked hypophosphatemia is a rare, lifelong, genetic disease that can impact the bones and muscles in both children and adults.1 In individuals with XLH, the body doesn't hold on to enough phosphorus, which is an essential mineral for bone health.1 This is due to the production of excess fibroblast growth factor 23 (FGF23), causing the body to release too much phosphorus through the urine.1 When phosphorus levels are too low (hypophosphatemia), it can cause the softening and weakening of growing bone in children (rickets) and of mature bone in children and adults (osteomalacia).1
In children, XLH typically appears as bowed legs or knock knees.1 Over time, bone weakening can lead to impaired growth and short stature.1 In adults, XLH may cause osteomalacia, fractures, and pseudo-fractures.1
About The XLH Network
The XLH Network supports families and individuals living with X-Linked Hypophosphatemia (XLH). Our mission includes promoting awareness and education, providing opportunities for connection and community, and fostering the search for a cure. Our vision is early, accurate diagnosis; readily available, well-managed treatment; and healthy quality of life for people living with XLH and related disorders.
You can learn more about the XLH Network at XLHnetwork.org.
About Kyowa Kirin
Kyowa Kirin aims to discover novel medicines with life-changing value. As a Japan-based Global Specialty Pharmaceutical Company, we have invested in drug discovery and biotechnology innovation for more than 70 years and are currently working to engineer the next generation of antibodies and cell and gene therapies with the potential to help patients affected by severe and rare diseases. A shared commitment to our values, to sustainable growth, and to making people smile unites Kyowa Kirin across the globe.
You can learn more about the business of Kyowa Kirin at kyowakirin.com or LinkedIn: Kyowa Kirin Inc. U.S.
1Dahir K, et al. X-linked hypophosphatemia: a new era in management. J Endocr Soc. 2020;4(12):bvaa151.
Photos accompanying this announcement are available at:
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Contact: Susan Thiele Head of Therapeutic Communications, North America susan.thiele.38@kyowakirin.com
XLH Community Guidebook
Readers can explore the content by topic or age group, making it a resource they can return to as their needs evolve.
Susan Faitos, Executive Director of The XLH Network
The XLH Community Guidebook provides easy access to actionable, evidence-based information for everyday life.
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