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Registration is now open for West Coast XLH Day 2015.  Go to www.xlhday.com for registration and details about this event, or click here.


News
March 25th
In the course of planning the West Coast XLH Day (registration is still open at xlhday.com, but closes at midnight March 30th, and while the event is free, you must register to attend), we've been thinking a lot about past events and the potential for fut…
March 18th
Today's guest post is by member Nancy J. Alauzen. She is an adult with XLH and a positive attitude. In her spare time, she loves to read and recycle.I have had XLH since I was born over five and a half decades ago. My mom skillfully managed my XLH un…
March 11th
The first official presentation of the XLH Burden of Illness Study's data happened this week at the 2015 ENDO Meeting of the Endocrine Society in San Diego, CA.It comes as no surprise to XLH patients that the study confirmed that "XLH can lead to signific…
March 9th
Registration for the West Coast XLH Day (April 9-10) in Novato, California, is now open at xlhday.com. Thanks again to Ultragenyx Pharmaceutical and Kyowa Hakkin Kirin Co., Ltd. for the generous educational grant that makes this event possible.In other ne…
March 4th
Registration for West Coast XLH Day (April 9-10) begins on Monday. We hope you will join us in Novato, California, to meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or …
March 2nd
. . . but TOGETHER we are STRONG.That's the motto for Give RARE Day.We hope you'll participate and support the XLH Network, Inc. Our page is here: http://giverare.razoo.com/story/Xlh-NetworkIf  you can donate, that's great. If you can't, there a…
February 24th
Rare Disease Day (February 28) is mostly about bringing attention to all of the diseases and their impacts. New this year is a related fundraising day, Give RARE Day, on March 3. The event was designed to acknowledge that more people are directly affected…
February 18th
Please save the date so you can join us for West Coast XLH Day on April 9-10, in Novato, California, to meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or your child’s s…
February 11th
The last day of February is World Rare Disease Day, which is intended to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.World Rare Disease Day is, as its name suggests, a global under…
February 4th
The Network's Board met on Sunday to select the portions of our Strategic Plan that we intend to accomplish this year.  Here’s a bit on the priorities for 2015.Plans are underway for West Coast XLH Day to be held on April 9-10, 2015&nb…

© 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 Mar 8, 2015


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