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Thank you for making this event a success and for supporting our first annual walk/run for XLH at XLH Day 2017.  You can still show your support for this event until the end of the year.

Click below for details.

                                                            XLHWalkRun


News
December 13th
A group of patients in Spain have formed an organization called the Spanish Association for Hypophosphatemic Rickets and Osteomalacia (AERHyO), and are working hard on behalf of the approximately fifty known patients in Spain and the hundreds more that ar…
December 6th
Seven members of the XLH community went to the U.S. Food and Drug Administration on Monday to argue in favor of approving KRN23/burosumab for the treatment of XLH in both children and adults. The focus of our presentation was that XLH is a whole-body, who…
November 29th
The weekend of November 4th, patient advocates for the XLH community gathered in Frankfurt, Germany. Two board members, Oliver Gardiner and Elizabeth Olear spoke at the meeting, sharing their personal experiences and those of the Network.Elizabeth and Oli…
November 21st
Kimberly Murray is a member of the Network who has XLH herself and a daughter with XLH. She recently participated in a couple of fundraising efforts, and she's here to tell you why and how she did it. October has always been my favorite month. For on…
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'…

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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 Nov 26, 2017


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