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News
October 20th
Join us for our first Midwest XLH Day on November 14-15, 2014 in Indianapolis, IN!  At Midwest XLH Day, you will meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your ow…
October 15th
Our Scientific Advisory Board chair, Dr. Carolyn Macica, is the lead investigator in a new research study of XLH patients, looking into mobility, gait and range of motion issues. She's looking for adult volunteers with XLH.Here's the official announcement…
October 8th
The lead scientist in charge of the Burden of Illness survey that we've been talking about (if you haven't taken it yet, consider doing it now by clicking here), Ali Skrinar, PhD, MPH, with Ultragenyx was kind enough to share with the Network's Board some…
October 1st
This week we have a note from the Network's fundraising chair, Joyce Inman: Did you know that the XLH Network is one of the many charitable organizations registered with the Amazon Smile program?  This means that if you are an online shopper wit…
September 24th
The Board of Directors met in August to do some much-needed Strategic Planning for the Network. After an intense weekend, we now have a roadmap for the next few years. The bottom line: there's an overwhelming amount of work to do, and a lot of expenses to…
September 17th
Since the Network's inception in 1996, the members have talked a lot about our medical challenges and experiences, but now we'd like to expand the conversation to get a better idea of what our lives look like. Toward that end, we're challenging you to tak…
September 10th
Today, our guest blogger is Jennifer West, the mother of a spontaneous XLHer, who lives and works in the Wisconsin Northwoods.If you're a parent with young children, you're probably buried somewhere under a pile of school registration forms, early-re…
September 3rd
1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?I'd been a member of the Network since 2002, and was an early financial donor to the organization. I started to think about volunteering for t…
August 27th
Researchers are looking for adult XLH patients in Japan and Korea, to participate in a study involving KRN23, the antibody being developed to reduce excess FGF23, which appears to be at least part of the root cause of XLH patients' symptoms.You can read m…
August 20th
The video on Growing Up With XLH (which you can see here) was entered in the Telly Awards, which "honors the very best film & video productions, groundbreaking online video content, and outstanding local, regional & cable TV commercials and progra…

© 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 Oct 19, 2014


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