Support our first annual walk/run for XLH at XLH Day 2017.
Click below for details.
News
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…
June 7th
It's almost time to register for XLH Day, which will be held on October 6-7 at Quinnipiac University's Frank H Netter MD School of Medicine in North Haven, Connecticut. We expect the registration site toopen July 9th and close September 16. Please don't t…
May 31st
Tumor Induced Osteomalacia is an ultrare condition where a tumor excretes excessive amounts of FGF23, which in turn causes phosphate wasting. It's essentially a tumor-caused (instead of genetically caused) version of hypophosphatemia.For many patients wit…
May 24th
XLHers frequently experience calcified soft tissue, either in the kidneys (generally believed to be a side-effect of treatment) or in tendons and ligaments (the exact cause of which is unclear at present).One such condition is OPLL or Ossification of the …
May 17th
The Network has been hard at work looking for ways to expand XLH Day, educate the community about XLH and introduce new fundraising initiatives that will help expand our services! We are happy to announce that we will be adding a community walk/run to tak…
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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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