News
August 23rd
Global Genes (globalgenes.org) has a really outstanding webinar (video) at its site with suggestions for working with your health care team about your (or your child's) rare disease.Three particularly interesting points were:1) it's useful to write out a …
August 16th
Even as we're recovering from an amazing XLH Day in Houston, Texas (more on that next week), we're gearing up to represent the XLH community at other events this fall.First up is the American Society for Bone and Mineral Research (ASBMR) annual conference…
August 9th
The Network's board is getting ready for XLH Day, where we're hoping to hear the stories of everyone there. That's only a small portion of our membership, though, so we still want to hear your stories for our book, Weak Bones, Strong Wills, The Stories of…
August 2nd
A new research study at Quinnipiac University, led by our Scientific Advisory Board chair, Carolyn Macica, PhD, is looking into XLH patients' experience with joint replacement surgery. Please note that anyone currently in a clinical trial is NOT eligible …
July 26th
Even as we're putting the final touches on the program for this year's XLH Day in Houston, Texas, we're already thinking about the next event in 2017.Picking a location starts by finding a keynote speaker. As we're all aware, there aren't that many expert…
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…

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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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