• Group Photo
  • slide
Learn More

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

Virtual XLH Week starts October 3rd. Watch our Events page for details and registration information.

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...


Voice of the Patient Report.


Report and transcripts from
The Symposium on Hypophosphatemia



Click HERE to access the PRIME toolkit to help you understand and explain XLH to your family and care team.

Upcoming Events

FB Sneak Peek (1).png


Let's Get Social


Follow us on Facebook and Instagram to keep up with the XLH Networks latest posts!

Kim M.

Close Story

Our Stories 2

Close Story

Meet Emily

Close Story

Our Stories 4

Close Story

Our Stories 5

Close Story

Our Stories 6

Close Story