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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

Our Stories

Kim M.

Meet one of our Network Board Members, Kim M. from Louisiana! She is 36 years old and has a precious three-year-old daughter. Kim was diagnosed with XLH when she was two years old, after her mother kept advocating for her and fought for a correct diagnosis. In 2015 she had a genetic test to confirm that she had XLH, and subsequently she was able to get an early diagnosis for her daughter by having her genetically tested as well.

Jenna R.

Jenna is a full-time college student studying graphic design from Springfield, MA. Jenna doesn’t let XLH define her or stop her from chasing her dreams.

Marina

Jenna is a full-time college student studying graphic design from Springfield, MA. Jenna doesn’t let XLH define her or stop her from chasing her dreams.

Danaya B.

Danaya is a talented makeup artist and dance coach who lives in San Antonio, TX. She was diagnosed with XLH at two years old through bloodwork, but she has never let XLH stop her from accomplishing her dreams!

Robert D.

Robert was born in New Jersey and currently lives in Trucksville, PA. He was diagnosed with XLH at 6 years old through lab work.

Shay W.

Here is the first post in our “Meet a Member Wednesday” series. Meet Shay W! She was born and raised in St. Louis, MO and was diagnosed with XLH at 18 months old, and is a spontaneous case.