For Medical Professionals and Advanced Understanding
The XLH Network keeps a contact database of medical professionals having experience with XLH. It’s available, confidentially, to members based on location.
If you would like to add your name to our contact database as a professional with experience treating people with XLH, please fill out our online information form. Contact information is kept private and confidential. Contact us if you’d like us to facilitate introductions or provide contact information for consultations or discussion.
A number of researchers and clinicians with an interest in XLH are members of The XLH Network Inc. If you would like to join our organization, you can apply online.
© 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…