By: The XLH Network Inc. Coordinators

In 1996, Larry Winger, whose family is affected by XLH, created a set of web pages in an attempt to understand the disorder. Enquirers began to look through these pages, and it was with Colin Steeksma that the internet-based mailing list F-HYPDRR was set up with a simple purpose:

• To provide a support group dedicated to the genetic disorder of phosphorus metabolism that causes familial rickets, the condition now called XLH.

Until that time, most of those affected with XLH had never met others with the disorder outside of their families, and thus felt alone dealing with the disorder. It was also difficult finding medical specialists with first-hand knowledge of the disorder, and families certainly felt far removed from any understanding of contemporary research directions.

As the worldwide XLH community grew, The XLH Network Inc. developed from the singular goal which had defined the F-HYPDRR list. The XLH Network Inc.'s goals have since expanded along with the membership, but the organization remains committed to the original core mission:

1. Provide information and support to patients and their families
2. Provide information for physicians and other medical professionals
3. Expand public awareness of XLH
4. Support and facilitate research into XLH

The XLH NetworkInc.'s objectives are achieved by a broad range of programs for members and medical professionals including, of course, the active mailing list (F-HYPDRR) and both public and Members Only web sites which have gathered together a great deal of information about the disorder.

Additionally, members participate in regional meetings several times a year where they share their experiences and provide support. These meetings are also an opportunity for the medical community to share with patients the latest research on XLH.

Last modified Aug 8, 2007

XLH is also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) Rickets and even Genetic Rickets. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spotaneous dental abscesses, and low blood phosphorus levels.

© 2002-2007, 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 complete web-site bibliography is available. Please read our full disclaimer.