News
July 19th
It's that time of year -- outfitting the kids for back to school. That used to mean trips to the mall, but these days, a good bit of the shopping is done online through Amazon and other digital retailers.If that's how you shop, please consider using the A…
July 12th
Ultragenyx Pharmaceutical has received "Breakthrough Therapy" designation from the U.S. Food and Drug Administration (FDA) for KRN23 for treatment of XLH in pediatric patients. http://ir.ultragenyx.com/releasedetail.cfm?ReleaseID=977346This is not th…
July 11th
Texas XLH Day registration is closed.We look forward to seeing everyone who's registered, and hope to meet even more people at future events.
July 8th
Registration closes at midnight on Monday, July 11, 2016, so you're almost out of time! Don't risk missing the deadline -- register now at XLHDay.org
July 5th
If you're still debating whether to attend TX XLH Day, would it help to know that we're planning some great activities for children and teens? (And we'll also have infant care services.)Board member Rachael Jones has been involved with the well-received c…
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…

Top of Page

© 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


We comply with the HONcode standard for trustworthy health information: verify here.

Site provided by Vibrant Creative