News
May 20th
The XLH Network is always interested in recruiting volunteers to help us meet our mission. We realize that we talk about our need for volunteers frequently, but at this time of year the nominating committee always considers how to increase involvement in …
May 13th
A report from Network President Becky Mock on last month's Ultragenyx Patient Day:Ultragenyx hosted their second annual Patient Day on Saturday April 11, 2015 in sunny Novato, California. Approximately 68 XLHers and their family members joined other rare …
May 6th
Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. I was always a difficult person to buy shoes …
April 29th
Today's post is by Gin Jones, wearing her "member at large" hat, and not on behalf of the entire Board. I'm just sharing some thoughts that keep me awake in the middle of the night. I don't have any answers, but all discovery starts with questions.There's…
April 22nd
Ever wonder what it's like to be a guinea pig? A few XLHers had the chance to find out a few weeks ago, when I volunteered for the Gait, Mobility and Range of Motion study led by SAB chair, Carolyn M. Macica, PhD at Quinnipiac University's Frank H. Netter…
April 15th
Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. “Can you describe the pain for me?”This is a …
April 8th
If you've been disappointed about not being able to go to XLH Day this year, we've got some news that might cheer you up a little. It's not the same as being there, since we can't bring your fellow XLHers into your home for socializing, but we can bring t…
April 1st
1. How did you get involved with the XLH Network, and then how did  you become a member of the Board of Directors?I was completely ignorant of the adult issues encountered by XLHers (and even that what I was originally diagnosed with -- vitamin D res…
March 31st
West Coast XLH Day registration is now closed. We hope you've already secured your spot, and we look forward to meeting new friends and catching up with old friends.
March 30th
If  you've been waffling about going to XLH Day, it's time to make up your mind. Registration ends on March 30th, and we cannot guarantee hotel rooms or rates and cannot accommodate walk-ins on the date of the event. Reserve your space now at xlhday.…

© 2011, 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 of the F-HYPDRR group, a mailing list for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer

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Last modified May 14, 2015


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