News
December 17th
You can now see the remainder of the favorite pictures in both the adult and child categories of our photo challenge over at our facebook page: https://www.facebook.com/xlhnetworkBefore you click on over, or while you're checking out all the pictures, we …
December 10th
Three months ago, we challenged our members to take a picture (or three) that reflected the theme of "What XLH means to me."With the help of our guest judge, Laura Hennsser, a photographer and a Curatorial Project Assistant with London's Tate Modern,…
December 4th
If you want to have some input into future research and the clinical understanding of XLH patients' experiences, you're running out of time to participate in the Burden of Illness survey. The last day to accept input is this coming Monday, December 8.It's…
December 2nd
The Network has been doing its job all year, and now, on #GivingTuesday, we're asking our members to let us know our work is appreciated.If you haven't donated yet this year to keep the Network moving forward, how about doing it now? Here's the link with …
November 25th
This year has been a busy one, with lots of firsts, like our recent Midwest XLH Day. Now it's time for another first: our first year participating in #GivingTuesday.If you've never heard of the event, here's how the official website describes it: "We have…
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 …

© 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

Top of Page

Last modified Nov 22, 2014


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

Site provided by Vibrant Creative