The information on this website is provided as a public service and is for informational and educational purposes only. The website, F-HYPDRR listserv, XLH Forum and our activities to raise awareness about XLH have been supported primarily through donations from people affected by these disorders, their friends and loved ones. We have not yet received any funding from any governmental agency, school or university, nor have we received any funding in exchange for any advertising or other promotion.
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. If you have XLH and need information on how to find an XLH-experienced physician, contact The XLH Network, Inc.
All statements, case histories, stories, narratives, or discussions made within the pages of this website, or within the associated F-HYPDRR mailing list or XLH 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 members' own medical supporters and caregivers before adopting or passing on to others.
Unless otherwise stated, the information on these pages has not been written by medical professionals nor by individuals with any specialized medical 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. Information on this website does not necessarily represent the opinions of other people or organizations that The XLH Network, Inc. may be affiliated with.
Confidentiality of data relating to individual patients and visitors, including their identity, is respected. We subscribe to the HONcode principles of the Health On the Net Foundation.
© 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.
- XLH Network Survey
- The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback…
- 2013 Rare Disease Day Symposium
- In February the 2013 Rare Disease Day Symposium was held in California at the Sanford-Burnham Medical Research Institute. This year's topic was "Calcification Disorders - from Hardened Arteries to Soft Bones". Amo…
- New National Institutes of Health Research Study
- NIH Research Study: Open-label Dose-titration Study of the Tolerability and Efficacy of Cinacalcet to Treat Fibroblast Growth Factor 23 (FGF23)-mediated HypophosphatemiaPrincipal Investigator: Dr. Rachel Gafni, MDSponsoring Institute: Craniofacial and Ske…
- Scientific Advisory Board member wins award at ASBMR
- Michael Econs, XLH Network Scientific Advisory Board Member (SAB), was awarded the Frederic C. Bartter Award for outstanding clinical investigation in disorders of bone and mineral metabolism at the American Society for Bone and Mineral Research…