Support our first annual walk/run for XLH at XLH Day 2017.

Click below for details.


September 20th
Some data from the clinical trials of KRN23/burosumab were shared with clinicians and researchers during the recent conference of the American Society for Bone and Mineral Research. Dr. Karl Insogna presented about the treatment of adults, and Dr. Michael…
September 17th
XLH Day Registration is now closed. Attendees will receive an email in the next two weeks with last-minute information about the event.
September 15th
This is it -- just one more day to register for XLH Day at Registration closes at midnight Eastern time on Sunday, September 17th.
September 13th
Registration for XLH Day closes this coming Sunday, and you won't want to miss it! Register now at xlhday.orgWe'll be making some big announcements during XLH Day, with opportunities for you to make your voice heard in the medical and regulatory communiti…
September 6th
Labor Day in the United States is dedicated to the achievements of American workers, but it's often celebrated with family and friends as opposed to co-workers. If you live in the United States, odds are you had a barbecue or other get-together this …
August 30th
First, a quick note -- if you've registered for XLH Day (or plan to) and don't have your hotel reservations yet, make them now. The discounted rate is only good through September 5. Also, if you'd like to apply for financial assistance with the hotel cost…
August 25th
The application for approval of KRN23/burosumab has been filed with the U.S. Food and Drug Administration, according to a press release by Ultragenyx Pharmaceutical and Kyowa Hakko Kirin.The filing sets a number of timeframes in motion. The first one is a…
August 23rd
Can't decide whether to come to XLH Day this year? Perhaps some pictures from last year's event will help. You can see them at our facebook page here:, there's …
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 …

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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

Last modified Aug 13, 2017

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