News
February 4th
Registration (and scholarship applications) is open now for Ultragenyx Pharmaceutical's Patient Day, designed to honor patients (children and adults) with rare diseases, including XLH. The event will be held on May 21, 2016 in Novato, California.Please no…
February 2nd
Save the date: TX XLH Day will be held on August 12-13, 2016 (get-together on Friday night and main events on Saturday) in Houston, TX. More details will follow as we have them, and will be announced on all our social media platforms.Meanwhile, if you wan…
January 26th
Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. The New Year often brings new resolutions, ne…
January 19th
We are excited to share the XLH Network’s 2015 fundraising report with our members! During the 2015 calendar year we met or exceeded all of our fundraising goals, and we have each of you to thank for our success.This year included our first Give Rare camp…
January 12th
Last year, several of our members went to Ultragenyx Pharmaceutical's Patient Day, designed to honor patients (children and adults) with rare diseases, including XLH. If you'd like to go this year, it will be held on May 21, 2016 in Novato, California.Ple…
January 5th
The Network is pleased to announce that a new director has joined the board: Rachael Jones (no relation to Gin). Some of you may have met her at an XLH Day event, since she's been a huge help, particularly with respect to the children's activities at the …
December 28th
It has been an honor and a privilege to serve as the President of the XLH Network for the past three years, but it is time for me to pass the gavel to someone else. I will be stepping down as president at the end of this year, although I will continue to …
December 21st
The Board is taking a tiny break from year-end fundraising and our other duties to enjoy the holiday week (but it's not too late to make your donation here: http://xlhnetwork.org/index.php/donate/ ).You can see our festive pictures in a card posted a…
December 20th
There are a total of 29 locations for the KRN23 adult clinical trials across the globe now (some not yet recruiting, while they wait for local approvals, but you can contact them now to let them know you're interested when the location is fully set up), i…
December 15th
We are excited to announce that this year we had our best #GivingTuesday in the history of the XLH Network, and this, of course, is due to the generous contributions of our members, family, and friends.Including the Board’s matching funds, #GivingTuesday …

© 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 May 14, 2015


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