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News
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…
May 10th
Too often, XLHers experience less than ideal treatment by clinicians who aren't familiar with XLH. But what about the good ones? We know they're out there, and we're looking to recognize the work of a clinician (doctor or nurse-practitioner) who goes the …
May 5th
The latest press release from Ultragenyx Pharmaceutical, primarily addressed to investors, includes some new data on the healing of fractures in the adult XLHers in the Phase 3 clinical trial of KRN23/burosumab:"At study entry, 52% of patients (comprising…
May 3rd
This week, we've got a commentary from the parent of a spontaneous XLHer, who's dealing with chronic pain against the backdrop of negative press about opiates. Here's what the parent had to say:Did you know that when it comes to pain treatment some profes…
April 26th
The Ultragenyx Patient Day was held this past weekend at the company's Novato location. Rare disease patients from across the country gathered for a day of networking, family activities and the chance to connect and share with others. Fifty-fiv…
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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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