About Us

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

"to facilitate advocacy, education and research for XLH and related disorders by creating resources and a community for affected families, educating and supporting physicians and  other providers of medical care, and fostering the search for a cure"

Joanne Joseph (at left) at the Rare Bone Disease Patient Network booth
at the Pediatric Orthopedic Surgeons of North America (POSNA) Conference
May, 2010

 

© 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. 

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