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News
August 16th
We are excited to let our members know that the XLH Patient Registry and Natural History Study is coming together! A project like this is essential for providing researchers with the information they need both to ask and to answer questions about hypophos…
August 9th
Last year, when Network board members had a booth at the Endocrine Society's annual conference, the most frequent statement they heard from passing doctors was "Oh, I don't need to know about XLH because I only treat kids."The board members jumped up and …
August 2nd
Technically, XLH refers to hypophosphatemia that is "X-linked" (i.e., the relevant genetic defect is on the X chromosome), and the genetic transmission is explained below. Note, however, that the "autosomal dominant" version (where the relevant genetic de…
July 26th
As we were starting to construct the first-ever comprehensive natural history study of XLH, we realized it was a huge challenge, because, unlike some conditions, XLH affects pretty much every system of the body.Scientists divide the human body into ten sy…
July 19th
It may only be mid-July but in just a few short weeks, school will be back in session! It can be a hectic time of the year, from shopping for clothing to making sure everything on the supply list is in the backpack before the first day.Did you know there’…
July 12th
XLH Day Registration is open at XLHDay.org. We think you'll be as excited as we are with everything we've got planned, from panel discussions to interactive discussions, a children's program, and even a picnic dinner at a local state park. You can see the…
July 4th
We're all on vacation, but want to wish everyone in the U.S. a great Independence Day, and to everyone else we wish the best of your July holidays, including but not limited to:Bastille Day Canada DayConstitution DayDay of the SeaEmancipation DayFamily Da…
June 28th
According to a recent Ultragenyx press release, the company has had a meeting with the FDA to discuss the planned submission for approval of KRN23/burosumab, with encouraging results. The press release states: "At the meeting, the FDA agreed that the…
June 21st
Our book of the XLH community's experiences with the condition, Weak Bones, Strong Wills, the Stories of XLH has been compiled and edited, and now is going through a final proofreading. We think you'll find the stories inspiring, and you'll recognize…
June 14th
McGill University held a symposium last year on "Soft Bone and Tooth Diseases -- what can we do about them?"You can watch the video of the symposium here: http://www.canalsavoir.tv/videos_sur_demande/cafes_IRSCCIHR_2016/softbones_toothdiseasesDr. Fra…
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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 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.
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