News
November 19th
We're coming up on the traditional time to think about what we're grateful for.We'd like to suggest that you think about some people you probably haven't met: the researchers working on a cure for XLH. They need our help.Until recently, research was done …
November 12th
The treatment for XLH that's currently in clinical trials, KRN23, was recently granted "orphan drug status" in the European Union.As explained in the press release from Ultragenyx, "The European Commission grants orphan drug status for medicinal products …
November 9th
Registration for our first Midwest XLH Day on November 14-15, 2014 in Indianapolis, Indiana has closed, and confirmation letters for the complimentary hotel rooms are being sent.If you originally thought you'd be unable to attend, and are now able to, ple…
November 5th
The XLH Network is at a watershed moment, where for the first time ever, there's hope for an effective treatment for both children and adults with XLH within the next five years. The Network's mission involves education, awareness, and support for the XLH…
November 3rd
Time is running out!Join us for our first Midwest XLH Day on November 14-15, 2014 at Riley Children’s Hospital in Indianapolis, Indiana! At Midwest XLH Day, you will meet other families dealing with XLH, discuss the challenges, learn how others cope, and …
October 29th
The deadline for our challenge to capture "What XLH means to me" in a picture is coming up fast: this Saturday, November 1.We've got some great pictures for our guest judge (Laura Hensser, a photographer and Curatorial Project Assistant with London's …
October 22nd
A number of our members have made inquiries about whether or not they can donate stocks and securities as part of their giving to the efforts of the XLH Network, and we are excited to inform you that now you can!Your gift of appreciated stocks or securiti…
October 20th
Join us for our first Midwest XLH Day on November 14-15, 2014 in Indianapolis, IN!  At Midwest XLH Day, you will meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your ow…
October 15th
Our Scientific Advisory Board chair, Dr. Carolyn Macica, is the lead investigator in a new research study of XLH patients, looking into mobility, gait and range of motion issues. She's looking for adult volunteers with XLH.Here's the official announcement…
October 8th
The lead scientist in charge of the Burden of Illness survey that we've been talking about (if you haven't taken it yet, consider doing it now by clicking here), Ali Skrinar, PhD, MPH, with Ultragenyx was kind enough to share with the Network's Board some…

© 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 Nov 22, 2014


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