The forums contain a wealth of information, with links to medical articles and ongoing research, as well as anecdotal experiences by those living with XLH.
Only a few of the myriad of topics are available without registering with the forum, primarily general FAQs. Once you join the forum, you will find that it is broken into several main areas, starting with "adult issues" and "pediatric issues," where there are more in-depth discussions on topics such as dental issues, pain management, hearing, etc. There are also two additional main areas available to those who register, one on general issues (e.g., insurance, ongoing research and clinical trials) and another on community issues (e.g., XLH Day and what the board of directors are up to).
We invite everyone who has XLH, is related to an XLHer, is a caretaker for an XLHer, is a medical provider for an XLHer or is simply interested in this rare metabolic bone disorder to join the forum as an "extended family / etc." member. Full membership, however, is limited to XLH patients and the parents/guardians of children with XLH.
The information in this forum is provided as a public service and is for informational and educational purposes only.
Before you choose a user name, please remember that anything you put on the internet, despite the forum administrator's best efforts, may well become public knowledge. If you would like to add an extra layer of protection (nothing's infallible, remember) in a place where sensitive matters may be discussed, you may wish to choose a user name that is NOT your real name. You may do so, and all of your postings here will reference that pseudonym. You will need to provide a real name during the registration process, which is only for the use of the XLH Network, Inc.'s membership records, not for public access.
If you prefer not to join the forum, you can find our official page at Facebook (facebook.com/xlhnetwork) but note that simply following us initially will NOT guarantee you receive our messages; if you want to be sure to get them in the future, please like, comment or share a post from our page at least once a week). You can also follow us on Twitter (@XLH_Network), or subscribe to our blog (
thexlhnetwork@blogspot.com).
The XLH Network, Inc. is incorporated in New York State as a not-for-profit corporation, qualifying for 501(c)(3) tax-exempt status as a public charity. It is not engaged in providing medical advice or professional services. Nothing herein should be used for diagnosing any health problem or disease, nor construed as the prescription of medication or treatment for XLH or any other medical condition. In particular, information on this website does not substitute for professional care. The information provided here is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing doctor. If you have XLH or suspect any problem with your health, consult your doctor or other health care provider.
All statements, case histories, stories, narratives, or discussions made within the pages of this forum regarding medical or dental symptoms, treatment, or the results thereof, should not be taken as indications of diagnosis, or proof of relief, cure, or even of general use to all. XLH has so many differences in symptom severity that each experience, although similar, should be taken as unique and not necessarily related to the experience of anyone else. All information is for educational purposes only and is not applicable to any individual patient or person. All statements should be checked thoroughly with the source and/or your own medical supporters and caregivers.
Unless otherwise stated, the information on these pages has not been written by medical professionals nor by individuals with any specialized medical or legal training. Every effort has been made to ensure the accuracy of the information provided on the website, but The XLH Network, Inc. can neither be held responsible for such information nor be held responsible for information on linked sites.
Statements by general members of the Network do not not necessarily represent the opinions of the XLH Network, Inc. Statements in posts made here by officers and board members of the XLH Network, Inc., reflect only the individual person's opinion unless the posting is specifically stated to be the position of the XLH Network, Inc.
Confidentiality of data relating to individual patients and visitors, including their identity, is respected. The XLH Network. Inc., subscribes to the HON code principles of the Health On the Net Foundation, and we have an ethics committee to address any ethical issues the XLH Network, Inc. may confront.
