Community.
Education.
Advocacy.
Compassion.

Learn About XLH

X-Linked Hypophosphatemia (XLH)
is a rare genetic disorder affecting about one
in 20,000 people.

Find a Doctor

Since XLH is a rare genetic disease, it can be difficult to find doctors with relevant experience diagnosing and treating XLH.

Join Our Community

Become a member of the XLH Network today. The XLH Network is the main hub of connection and support for those living with XLH.

The XLH Network supports families and individuals living with X-Linked Hypophosphatemia (XLH).

Our mission includes promoting awareness and education, providing opportunities for connection and community, and to foster the search for a cure.

Our vision is early, accurate diagnosis; readily-available, well-managed treatment; and healthy quality of life for those who are affected with XLH and related disorders.

A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)

Network Events

28

November

2024

LGBTQ + XLH Peer Support Group

01

December

2024

XXLH — Young Adults Support Group

26

December

2024

LGBTQ + XLH Peer Support Group

View more events

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I am so glad I found the Network! I have learned so much about my condition that I never knew. I feel more confident about the future knowing I have all of you to count on!

Before we found the XLH Network, we were scared and confused. Our doctor didn’t seem to know much about my daughter’s condition. Now I have a way to get information plus I have a new family.

The people at the Network are like family to me. Nobody else “gets” it and I look forward to seeing everyone each year at XLH Day.