The XLH Network, Inc. does not sell, rent, exchange or otherwise disclose our mailing lists or information about our site visitors, subscribers or members. We subscribe to the HONcode principles of the Health On the Net Foundation.
Our F-HYPDRR mailing list is distributed to members world-wide via the Internet. It is a moderated subscription list, acting as a semi-public forum in which The XLH Network, Inc. members can share information and their experiences. The XLH Network, Inc. endeavors to include medical professionals and researchers who are particularly interested in XLH, as well as XLH patients and their families. Although privacy is a matter of serious concern to all of The XLH Network, Inc. members, everyone needs to be aware that information posted via the internet can never be guaranteed to be completely confidential.
© 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…