The XLH Network, Inc. is an all-volunteer organization working tirelessly toward bringing about awareness of X-Linked Hypophosphatemia and related disorders of phosphate metabolism. Our goals include early diagnosis and receiving appropriate treatment of this often-misunderstood condition. With early diagnosis and appropriate treatment, lives of those affected can and will be greatly improved.
has been supported thus far primarily through donations from people
affected by these disorders, their friends and loved ones. Anyone
interested in helping us further our mission is encouraged to do so.
The website, listserv and our activities to raise awareness about XLH
have been supported thus far primarily through donations from people
affected by these disorders, their friends and loved ones. Currently
we have not received any funding from any governmental or public
agency, school or university, nor have we received any funding in
exchange for any advertising or other promotion.
There are many things we could do more effectively if increased
funding was available. Currently we would like to increase awareness
by attending professional conferences. The conferences have been
attended by our board of directors at their own expense. With your
help we can continue to attend these conferences and continue to see
greater awareness. With awareness comes understanding and appropriate
treatments for all those affected. Other inititatives we would like
to begin include creating a newsletter to be distributed to our
With your help we can continue to see The XLH Network, Inc. grow. Please help us move forward. We have now made it easy to donate online through PayPal. (You do NOT need to have or establish a PayPal account to donate. Just follow the links for non-PayPal account holders). Also, if you prefer, checks drawn on USA banks can be sent to:
We are a 501(c)(3) tax-exempt organization, so all contributions to The XLH Network, Inc. are tax-dedutible to the extent allowed by law. Contact your own tax advisor regarding your personal tax situation.
If you are interested in our mission or wish to help in any way, please contact us via e-mail or write to us at the address above.
Cars 4 Causes has partnered with the XLH Network Inc. Cars 4 Causes specializes in car donations and your donation through Cars 4 Causes will help raise money for the XLH Network Inc.
Reminder: Many companies offer matching gift programs to encourage employees to contribute to charitable organizations. Most of these programs match your contributions dollar for dollar, and some even double or triple the amount of your gift. Inquire through your company human resource department to see if it sponsors matching gift programs that would match a gift to The XLH Network, Inc.
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