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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.
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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.
- Advocacy with ASBMR
- It's easy to think of politicians as ignorant or foolish or self-aggrandizing, and I'm about as cynical as anyone, so I was pleasantly surprised by the experience of visiting Capitol Hill to advocate for sustained funding for basic science research at Nat…
- New NIH 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: Craniofaci…
- Rare Disease Week
- The last day of February each year is World Rare Disease Day. This year, it falls on February 28th.Here in the U.S., several medical-professional and patient-support groups have gotten together to make the entire week into a time of awareness and advocacy…
- The Social Media Flashlight: How Facebook Demystified XLH
- We have another guest post today, this time from Jennifer West. She's the mother of an XLHer, who lives and works in the Wisconsin Northwoods. She's also an antique-collector and nature-lover. 2009 was one crazy year. Our youngest child was born, and…