The Mission of The XLH Network Inc.
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
To provide a support group dedicated to the genetic disorder of
phosphorus metabolism that causes familial rickets, the condition
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
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:
Provide information and support to patients and their families
Provide information for physicians and other medical professionals
- Expand public awareness of XLH
- 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
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 Mar 27, 2011
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 spontaneous
dental abscesses, and low blood phosphorus levels.
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
is available. Please read our full