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A worldwide patient support organization for people living and dealing with x-linked hypophosphatemia (XLH)

The XLH Network is proud to be celebrating our 25th year of service to the XLH community. We couldn't do it without your help! Please consider making a donation by clicking on the "Donate" button below.

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The XLH Network and Quinnipiac University are conducting a study to gather information about how individuals learn about their XLH diagnosis, and how they choose to use services such as genetic counseling and testing. Learn more here.



The 2nd Annual XLH Cross-Country Challenge is now going strong with over 10 teams racing across the country with hopes of claiming victory.  Help us reach our fundraising goal of $25,000 by either donating directly to a team or to the XLH Network.

What is XLH

X-Linked Hypophosphatemia (XLH) is a rare genetic disorder that affects about one in 20,000 people. The key characteristic of XLH is a low level of phosphorus in the blood, called Hypophosphatemia. When a person is affected by XLH, their kidneys do not properly handle Vitamin D and phosphorus. This causes a variety of symptoms and disorders that usually affect their bones and teeth. Learn More...


The XLH Network is proud to work with PRIME. Click on the image below to learn more.




Voice of the Patient Report.


Report and transcripts from
The Symposium on Hypophosphatemia




Upcoming Events

Follow the XLH Network Inc. Facebook Page for details on how to access these events.







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