News
January 24th
Every year, Ultragenyx Pharmaceutical invites patients with certain rare diseases, including XLH and the related phosphate-wasting disorders, to their annual patient day in Novato, California, for food, games, refreshments and live music.This year's event…
January 19th
It's easy to fall into hopelessness and the feeling that there's nothing you can do to improve either your own XLH experience or anyone else's.That's not true, though. There are several things you can do right now:1. Keep yourself informed about the lates…
January 17th
XLHers don't let their challenges keep them from accomplishing great things. This past November, three girls with XLH participated in swimming events at the 2016 Peru National Paralympics,  held at the Olympic Swimming Pool in the Callao-Lima Region …
January 12th
The medical community is listening to patients more and more, and now the XLH community is in particular demand for sharing our thoughts and experiences as the time approaches for Ultragenyx Pharmaceutical to apply for early approval of KRN23 for pediatri…
January 9th
Ultragenyx has announced that "the European Medicines Agency (EMA) has accepted for review the Marketing Authorization Application (MAA) for KRN23 for the treatment of X-linked hypophosphatemia (XLH). The MAA was filed and accepted in late 2016, and an op…
January 5th
We're pleased to have a new board member, Elizabeth Olear, joining us. To help you get to know her, she's answered a few basic questions about what she sees as her role on the board.How did you become involved with the Network?I began working with Dr. Tho…
January 3rd
Effective January 1st, we have a slightly rearranged slate of officers and an additional at-large board member. The current officers and board members are:President: Bill CooganVice-President: Joyce InmanSecretary: Rachael JonesTreasurer: Geoff EdelsonRet…
December 27th
Message from the Network's President, Bill Coogan:We've already reviewed some of the milestones of the past twenty years, and now I'm here to share some of our expectations for the milestones of the coming year and beyond. If you want to see these goals c…
December 20th
Your hard-working board members are taking a brief holiday break this week and next, but we'll be back in the new year, representing the global XLH community (including those with related phosphate wasting disorders).You can see our holiday card over at o…
December 14th
In light of our anniversary, we're sharing a few milestones to indicate just how far the XLH community (including those with other related phosphate wasting disorders) has come in those twenty years.The Network was founded in 1996. That was four years bef…

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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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