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


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...












Report and transcripts from

The Symposium on Hypophosphatemia

Upcoming Events

Program Title: Rare Disease Day Symposium 2020

Date: February 28, 2020

Time: 1 pm – 5 pm

Location: Frank H. Netter MD School of Medicine, Quinnipiac University; MNH-101

Type of Activity: Conference, Symposium; CME accredited

Event Website URL: Go.qu.edu/RareDiseaseDay


Program Title: San Francisco Meet & Greet

Date: April 17, 2020

Time: 5:30 - 8:00 pm

Location: Hyatt Regency SFO Poolside Pavillion

Type of Activity: Networking, Social


Program Title: XLH Day 2020

Date: October 9-10, 2020

Time: TBA

Location: Phoenix Children's Hospital, Phoenix, Arizona

Type of Activity: Conference, Education, Networking, Social






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