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

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News
November 15th
Susan Faitos is an XLHer who has helped us with XLH Day in the past. She's here to talk about what it was like to do a peer-to-peer fundraiser for the Network. When The XLH Network, Inc. reached out for volunteers to participate in peer-to-peer fundr…
November 8th
One of our members, Robert DeRemer, Jr., found a great, fun way to help the Network, and we asked him to share a bit about his inspiration and process. At our official Facebook page, facebook.com/xlhnetwork, you can see a picture of Robert with Scientific…
November 1st
It's not often that something life-changing happens to an entire global community, but that could be true for XLHers of all ages in 2018. Next year may see the approval, all around the world, of the first-ever treatment for XLH (and the related hypophosph…
October 25th
We've all experienced it: the doctor who won't listen to the patient. It's not limited to rare disorders like XLH, but it becomes particularly challenging with conditions where there isn't a lot of scientific literature or even consensus, so you can say, …
October 19th
As part of our preparations for meeting with the U.S. Food and Drug Administration as part of its review of KRN23/burosumab, we've created an extremely brief survey about the most well-known symptoms of XLH.The survey is just four questions and takes less…
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  December 4, 2017 [previously set for January 2018], to make sure that the patients' (and their families') voices are heard as the FDA considers the safety an…
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 granted "priority review" status that will expedite the process. A decision is due from the FDA by April 17, 2018.You ca…
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…

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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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