Michael Econs, M.D.
Division Chief, Endocrinology & Metabolism
Indiana University Department of Medicine
Suzanne Jan de Beur, M.D.
Director of Endocrinology
Bayview Medical Center
Johns Hopkins University
Carolyn Macica, Ph.D.
Assistant Professor of Medical Sciences
Frank H. Netter MD School of Medicine
North Haven, CT
Peter S. N. Rowe, Ph.D.
The Kidney Institute & Division of Nephrology
University of Kansas Medical Center
Kansas City, KS
Raghbir Kaur, DMD
Just4kids Dental LLC
30 East 40th St, Suite 100
New York, NY 10016
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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.
- A Different Kind of Advocacy
- The last couple weeks, we've been focused on advocacy at the macro level, working with researchers and politicians. There's another kind of advocacy at the more micro level that we need to do. Rachael Jones (no relation to Gin Jones), herself an XLH patie…
- 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…