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News
October 29th
The deadline for our challenge to capture "What XLH means to me" in a picture is coming up fast: this Saturday, November 1.We've got some great pictures for our guest judge (Laura Hensser, a photographer and Curatorial Project Assistant with London's …
October 22nd
A number of our members have made inquiries about whether or not they can donate stocks and securities as part of their giving to the efforts of the XLH Network, and we are excited to inform you that now you can!Your gift of appreciated stocks or securiti…
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…

© 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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