News
June 28th
Sometimes, when writers get writers' block, they turn to "prompts" to get them started. Usually, once they start writing, they can keep going, and it's just getting over that initial hump that's difficult.Maybe you're experiencing the same thing. You want…
June 21st
We've got some musical inspiration for you, while you're thinking about coming to XLH Day in Texas. (And if you've already registered for the event, don't wait until we send out confirmations between July 12 and 17 to make your hotel reservations. Make th…
June 14th
As we're gearing up  to launch our natural history study platform in conjunction with the National Organization for Rare Disorders (NORD), which you can read about here (http://thexlhnetwork.blogspot.com/2016/04/major-new-initiative.html), we're thin…
June 7th
Registration is now open for XLH Day in Houston, Texas!For more information and to register, go to http://xlhday.org/
May 31st
It's just over two months to XLH Day (August 13, Houston, Texas) -- have you made your transportation plans yet?As always, we've got a great keynote speaker -- this year, it's Mary Ruppe, M.D.http://www.houstonmethodist.org/doctor/mary-ruppe -- who's putt…
May 24th
Ultragenyx Pharmaceutical sponsored its annual Patient Day in Novato, California this past weekend for patients with the rare medical conditions that the company is working on treatments for, including XLH. It was a chance for patients and their families …
May 17th
Today, our social media coordinator, Gin Jones, is here to talk about Weak Bones, Strong Will, the Stories of XLH, our planned book on the XLH experience: My mother's uncle was a great oral storyteller. Even when I was a self-absorbed teenager, I lov…
May 13th
A trial of KRN23 in infants/toddlers (age 1 to less than 5 years old) is recruiting patients now.You can read more about it, and get the current contact information here:https://clinicaltrials.gov/ct2/show/NCT02750618?term=xlh&rank=12At present, the o…
May 11th
If you don't already know about the clinical trials of KRN23, there are two Phase 3 trials going on now for adults, and we expect that there will be a Phase 3 pediatric trial beginning sometime this year. Check back for updates here, or in our discussion …
May 9th
If you know of XLH-related events happening around the world, please let us know by emailing: XLHstories at gmail dot com. Meanwhile, we've got some more news from our board member, Oliver Gardiner, and what's happening in the UK. Oliver represe…

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© 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 to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer

Last modified Mar 28, 2016


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