News
December 1st
Thanks to all the generous donors who participated in #GivingTuesday yesterday and chose the Network to receive the funds. We're already busy setting our budget for next year, looking for the best ways to put that money to good use (and to squeeze every p…
November 28th
You know how hard we're working to help the XLH community. Now it's your turn to support the Network.#GivingTuesday is here! Help the XLH Network bring awareness about our disease to medical and patient communities all over the world by giving this holida…
November 22nd
Three things for the XLH (and ADHR, ARHR and TIO) community to be thankful for this year:1. Hope for the future, with the encouraging data coming out of the KRN23 trials and other research into understanding the metabolic process that leads to phosphate w…
November 16th
On this, the twentieth anniversary of the XLH Network, we hope you'll remember us on Giving Tuesday, November 29th.You can donate here: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20pageWe'd be particularly grateful for recurring (als…
November 10th
According to a new press release from Ultragenyx Pharmaceutical, there are plans to file for approval of KRN23 in the US in the second half of 2017. An application is expected to be filed even sooner (around the end of 2016) for Conditional Marketing auth…
November 7th
The XLH Network, Inc., is investigating the possibility of establishing country-wide groups affiliated with the Network to address more local issues than a global organization is equipped to handle. To that end, board member Oliver Gardiner is lookin…
November 2nd
From the Network's president, Bill Coogan:As we enter this season of giving and acknowledge twenty years of accomplishments, please help us continue to help you. Donate now:  http://xlhnetwork.org/index.php/donate/Twenty years ago this summer, Larry …
October 27th
Ultragenyx Pharmaceutical, Inc. just announced that the first patient has been enrolled in the most recent KRN23 clinical trial. As explained by the CEO and President of Ultragenyx, Emil D. Kakkis, "This study will allow us to directly assess whether KRN2…
October 26th
Remember our call for stories about living with XLH? The deadline was October 1st, but we've been so busy working for  you that we missed our own deadline.We've got a bunch of great stories for Weak Bones, Strong Wills, The Stories of XLH, but it's b…
October 18th
As KRN23 is entering what is expected to be its final clinical trial prior to submission for approval by the FDA, it may be useful for the XLH community to understand more about this potential treatment.KRN23, rather than being a traditional drug, is simi…

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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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