News
September 2nd
In light of the upcoming Phase 3 trials for KRN23, we've been talking to some XLHers who have participated in a variety of clinical trials in the past, so we can share a bit about the experience generally. These comments are not specific to the KRN23 tria…
August 25th
The Phase 3 KRN23 clinical trials for adults with XLH are set to begin in October. The announcement indicates that they're not yet recruiting, but we'll  update when we find out that recruiting has begun.In the meantime, if you're considering partici…
August 19th
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. “Wait, I’m not disabled!”How familiar is that…
August 12th
The Network’s Board of Directors held its annual in-person meeting the first weekend of August this year, and while words are inadequate to convey the degree of dedication, excitement and anticipation in the air, I can give you a taste of the projects we’…
August 5th
Your blogger left all her deep thoughts on the table at the annual in-person Board Meeting, so all you get this week is a picture of the Network's board members at the beginning of our work, before we were too exhausted to smile for the camera.In the fron…
July 29th
The XLH Network, Inc. has always had a global focus, with members from all over the world. It's challenging, though, especially when it comes to fundraising and the lack of uniform international laws with respect to medical treatments and how those treatm…
July 22nd
You may recall that last year we announced that the XLH Network is now set up to receive donations of appreciated securities (stock). Perhaps you're already more financially savvy than most, and understand why that can be a useful financial planning tool,…
July 15th
If you missed the 2014 Midwest XLH Day (or went, but wish you'd taken notes during the speakers' presentations), we now have the videos available at our very own Youtube channel, so you can get the valuable information from home, at your convenience. You …
July 9th
There's been some discussion among Network members about the drug approval process, as KRN23 is entering Phase 3 clinical trials, and you may be wondering just what is involved and how long it takes.In extremely simplified form, the process in the United …
July 7th
The Network is hiring its first-ever employee (part-time, virtual administrative assistant), thanks to the generous financial assistance of Ultragenyx Pharmaceutical.If you're interested in applying, or know someone with the right skill set, the details a…

© 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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