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.
The XLH Network is helping thousands of people around the world who are affected 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 Inc 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.
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:
Early, accurate diagnosis; readily-available, well-managed treatment; and healthy quality of life for those afflicted with XLH and related disorders.