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

Click below for details.

                                                            XLHWalkRun

News
October 17th
During XLH Day, our Scientific Advisory Board offered special recognition to a high school student, Lindsay Peifer, for her dedication to science.Lindsay's XLH was confirmed by DNA testing and is spontaneous, which, she says, is "pretty obvious because I'…
October 12th
The XLH Network, Inc. will be meeting with the U.S. Food  & Drug Administration on January 9, 2018, to make sure that the patients' (and their families') voices are heard as the FDA considers the safety and efficacy of KRN23/burosumab and whether…
October 11th
The U.S. Food and Drug Administration has set the calendar for its review of KRN23/burosumab, the promising new treatment for XLH, and grated "priority review" status that will expedite the process. A decision is due from the FDA by April 17, 2018.You can…
October 10th
Our book, Weak Bones, Strong Wills, the Stories of XLH is available now at major online retailers!Here's an excerpt from the back cover copy:Our bones are soft, our lives are hard, but we are strong and resilient. We persevere, despite all the challenges.…
October 4th
While we're preoccupied with the final arrangements for XLH Day, we thought you might be interested in a TED talk by Sharon Terry on how she came to embrace citizen science, despite having no background in medicine. She is President and CEO of Genetic All…
September 27th
Much of the time, we're focused on the future -- what we've got planned, what we anticipate will affect the community going forward, and preparing you for the challenges we're all facing as we work to improve the lives of XLHers and their families.This we…
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 xlhday.org. 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…

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© 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 Aug 13, 2017


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