News
September 17th
Since the Network's inception in 1996, the members have talked a lot about our medical challenges and experiences, but now we'd like to expand the conversation to get a better idea of what our lives look like. Toward that end, we're challenging you to tak…
September 10th
Today, our guest blogger is Jennifer West, the mother of a spontaneous XLHer, who lives and works in the Wisconsin Northwoods.If you're a parent with young children, you're probably buried somewhere under a pile of school registration forms, early-re…
September 3rd
1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?I'd been a member of the Network since 2002, and was an early financial donor to the organization. I started to think about volunteering for t…
August 27th
Researchers are looking for adult XLH patients in Japan and Korea, to participate in a study involving KRN23, the antibody being developed to reduce excess FGF23, which appears to be at least part of the root cause of XLH patients' symptoms.You can read m…
August 20th
The video on Growing Up With XLH (which you can see here) was entered in the Telly Awards, which "honors the very best film & video productions, groundbreaking online video content, and outstanding local, regional & cable TV commercials and progra…
August 13th
Reason #5... It's easy. To get started, just click here: or go to https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORKReason #4...If everyone does it, I'll stop pestering you about it, and we can talk …
August 6th
As we mentioned in the Mid-Year Report a few weeks ago, the Board has been busy, and we expect to be even busier over the next eighteen months, now that we have a Strategic Plan in place.Over the last year a number of our members have volunteered to serve…
July 30th
How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?My daughter was diagnosed with a spontaneous case of XLH when she was two years old.  My research led to the Network, and I was ov…
July 23rd
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. You may remember him from a few months ago, when h…
July 16th
The first half of 2014 has kept Board members hopping. Our president, Becky Mock, has been traveling far (Chicago for the ICE/Endo conference in June), and near (her home state of North Carolina for ISPE-CaSA in April), and assorted places in between (mos…

 

XLH Day 2013

 

Videos and pictures are now available!

 

Go to www.xlhday.com

 

© 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 Sep 14, 2014


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