News
June 24th
You've met all of the current Board members, so over the next few months we're going to introduce you to some other key players in the Network. Our first interview is with Sally Cihos, who has been a recurring donor to the Network, and  recently made…
June 17th
With summer vacation time rapidly approaching, you may be feeling anxious about the physical challenges of air travel. Guest blogger Andrew Shortall is here with some tips and anecdotes.*bing*  “I’m sorry sir, would you step over here, please?”These …
June 10th
The expanded pediatric clinical trials for KRN23 are recruiting NOW!Here's the link to clinicaltrials.gov: https://www.clinicaltrials.gov/ct2/show/NCT02163577Note that this is happening in a number of countries, not just in the U.S. There are locations in…
June 3rd
1. How did you get involved with the XLH Network, and then how did  you become a member of the Board of Directors?It was only by chance that I learned that the disease that was common in my family, hypophosphatemic renal rickets was also called XLH a…
May 27th
1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?   I became a member of the XLH Network in 2000. I was having debilitating joint pain and looked to the internet for answers. Turns out m…
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…

© 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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