News
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…
July 9th
Back in April, we posted a picture on our Facebook page of our Board members attending the ISPE-CaSA event in North Carolina, but we've been so busy that we haven't had a chance to tell you all about it.ISPE-CaSA is the Carolina - South Atlantic chapter o…
July 2nd
Your intrepid blogger is on vacation this week, working in her garden and celebrating the American Independence Day.The XLH Network hopes everyone is having a happy and healthy summer. We'll be back next week with more news and stories about living with X…
June 25th
If you've been following us on Facebook (https://www.facebook.com/xlhnetwork), you've seen our pictures from the ICE-ENDO conference this week.The big news coming out of the conference, at least for XLH patients, is the announcement of the latest KRN23 cl…
June 20th
Ultragenyx Pharmaceutical, Inc. is sponsoring a research study to better understand how XLH impacts the lives of affected children and adults. The study consists of an online survey that asks questions about your experience with XLH, including how it was …
June 18th
This week, our webmaster, who prefers technology to essay writing, shares a little about his experience with XLH and involvement with the Network. 1. How did you get involved with the XLH Network, and then how did you become a member of the Board of …
June 13th
The pediatric (ages 5 to 12) clinical trial for KRN23 (the antibody developed to control FGF23, which is at least part of the root cause of XLH patient's phosphorus wasting) is about to start.Details are at clinicaltrials.gov: http://clinicaltrials.g…
June 11th
If you're following us on facebook (and I hope you are: https://www.facebook.com/xlhnetwork), you probably saw a picture of Network president, Becky Mock, along with Board members Oliver Gardiner (who flew all the way over to North Carolina from London!) …
June 4th
Today, I --  Gin -- am here, speaking personally, as opposed to in my official role as the Social Media Coordinator. There's a lot of disagreement in the medical community about almost everything, but the one thing that most experts agree on is …

 

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 Apr 5, 2014


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