In 1996 a college student in Minnesota connected online with a man in England whose wife and children have XLH, and with a man in British Columbia whose son had a spontaneous case. All of them were looking for help on the internet, and from this connection The XLH Network was founded in November, 1996 as an international volunteer group of people affected by or interested in XLH, or X-Linked Hypophosphatemia. Today we're incorporated as a 501(c)(3) tax-exempt charity – making all donations tax deductible to the fullest extent allowed by law. We are the first organization in the world specifically dedicated to XLH.
Growing daily, The XLH Network is helping thousands of people around the world who are affectede by or interested in XLH and related disorders of phosphate wasting. Our website provides information to people around the world with up-to-date information on diagnosis, treatment and the very latest research. XLH Network membership is growing daily, and members have available to them a variety of tools that help connect patients with each other, and with clinicians and researchers as well.
Our Mission Statement
The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.
Point by point analysis:
- The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large;
- to support physicians and other providers of medical care for better diagnosis and treatment;
- to create resources and a community for affected individuals and their families
- so they can understand and cope with the complications of the disease;
- and to foster the search for a cure
Our Vision Statement
Early, accurate diagnosis; readily-available, well-managed treatment; and healthy quality of life for those afflicted with XLH and related disorders.
Point by point analysis;
- Early, accurate diagnosis;
- readily-available, well-managed treatment;
- and healthy quality of life for those afflicted with XLH and related disorders.
© 2010, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers of the F-HYPDRR group, a mailing list for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer.
- XLH Network Survey
- The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback…
- 2013 Rare Disease Day Symposium
- In February the 2013 Rare Disease Day Symposium was held in California at the Sanford-Burnham Medical Research Institute. This year's topic was "Calcification Disorders - from Hardened Arteries to Soft Bones". Amo…
- New National Institutes of Health Research Study
- NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated HypophosphatemiaPrincipal Investigator: Dr. Rachel Gafni, MDSponsoring Institute: Craniofacial and Ske…
- Scientific Advisory Board member wins award at ASBMR
- Michael Econs, XLH Network Scientific Advisory Board Member (SAB), was awarded the Frederic C. Bartter Award for outstanding clinical investigation in disorders of bone and mineral metabolism at the American Society for Bone and Mineral Research…