News
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…
July 1st
The U.S. House of Representatives' Energy and Commerce Committee recently unanimously approved the 21st Century Cures Initiative, a bipartisan effort "to modernize and personalize health care, encourage greater innovation, support research, and streamline…
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…

© 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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