News
January 28th
We are all excited about the possibilities that 2015 brings for families with XLH, and we hope you are too! But as this first month of the year comes to an end, we wanted to express our appreciation for all of you who gave to our end-of-the-year campaign.…
January 21st
This week, we've got an interview of Board Director Kathy Buchanan. 1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?I had searched the internet years ago trying to find more information…
January 14th
We've always been an international organization, founded by XLHers in the United States and the United Kingdom, but we're becoming more global every day.Most recently, we've added a translation feature to our website. You'll find it in the upper right cor…
January 14th
Siempre hemos sido una organización internacional , fundada por XLHers en los Estados Unidos y el Reino Unido, pero nos estamos volviendo más global cada día .Más recientemente , hemos añadido una función de traducción en nuestro sitio web. Lo encontrará …
January 7th
We need teeth!Don't worry, we don't want you to pull out healthy ones and send them to us, but if you're an adult XLH patient who's having a tooth extracted in the next few weeks, we could use it for research.One of our SAB members, Carolyn Macica, PhD, i…
December 29th
Message from the XLH Network's President:This has been a tremendous year of growth. We've made incredible advances in educating members, doctors, and the medical community about XLH and its impact on our everyday life. It’s an exciting time for everyon…
December 22nd
We wish you a happy holiday season and a healthy new year.Left to right: Chris Younger, Kathy Buchanan, Gin Jones (front), Bill Coogan (back), Geoff Edelson, Oliver Gardiner and Becky Mock. (Not pictured: Joyce Inman)
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…
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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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