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Registration is now closed for West Coast XLH Day 2015.  Go to www.xlhday.com for details about this event, or click here.

 


 

News
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.…
March 25th
In the course of planning the West Coast XLH Day (registration is still open at xlhday.com, but closes at midnight March 30th, and while the event is free, you must register to attend), we've been thinking a lot about past events and the potential for fut…
March 18th
Today's guest post is by member Nancy J. Alauzen. She is an adult with XLH and a positive attitude. In her spare time, she loves to read and recycle.I have had XLH since I was born over five and a half decades ago. My mom skillfully managed my XLH un…
March 11th
The first official presentation of the XLH Burden of Illness Study's data happened this week at the 2015 ENDO Meeting of the Endocrine Society in San Diego, CA.It comes as no surprise to XLH patients that the study confirmed that "XLH can lead to signific…
March 9th
Registration for the West Coast XLH Day (April 9-10) in Novato, California, is now open at xlhday.com. Thanks again to Ultragenyx Pharmaceutical and Kyowa Hakkin Kirin Co., Ltd. for the generous educational grant that makes this event possible.In other ne…

© 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 Apr 1, 2015


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