News
May 4th
Social media has been a boon for many patients with rare disorders, enabling them to share their experiences with people who truly understand what they're going through.It's not without its down sides, though. Misinformation can be passed around, sensitiv…
May 2nd
In France, XLH is known as RVRH (comparable to the vitamin-D resistant rickets terminology in English), and there is a French-speaking group known as the "Association pour les personnnes atteintes de rachitisme vitamino-resistant hypophosphatemique." You …
April 27th
We're embarking on a new project to collect the stories of people living with XLH in a book tentatively titled, Weak Bones, Strong Wills, the Stories of XLH.One of the things we hear so often, from patients, caregivers and the general public is "I never k…
April 25th
Mary Ruppe, M.D., has agreed to be our keynote speaker at the Texas XLH Day on August 13, 2016 in Houston. We've heard great things about her from her XLH patients, and you can read more about her here: http://health.usnews.com/doctors/mary-ruppe-440…
April 19th
The XLH Network, Inc. has been awarded a grant to establish a Registry and Natural History Study in collaboration with the National Organization for Rare Disorders and the U.S. Food and Drug Administration. You can read the official NORD press release her…
April 12th
Most of our news tends to be about events and people in the United States, and we know that there's so much exciting work going on all around the world. We're going to remedy that, starting now. To kick things off, our board member, Oliver Gardiner, …
April 6th
Thousands of health care professionals with a particular interest in endocrinology (the hormone system) converged on Boston this past weekend to teach and learn and the annual conference of the Endocrine Society. Three members of the XLH Network's board w…
April 4th
A while back, we asked for your teeth. No, not the ones still in your jaw, but the ones that came out for one reason or another.We got quite a few, but now we need more!SAB member, Carolyn Macica, PhD., and her study team have processed the teeth that wer…
March 30th
XLH patients probably won't be playing professional basketball (until we find a cure or at least an effective treatment), but for anything that doesn't require height, XLHers can and do participate in a wide variety of careers and activities.We recently a…
March 28th
Did you know that there are a number of ways to give to the XLH Network, Inc. without actually writing a check? Obviously we hope you will consider donating throughout the year, and, of course, you can give appreciated stocks or work with your employer to…

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© 2011, 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 to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer

Last modified Mar 28, 2016


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