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WHAT DOES XLH MEAN?

stands for “X-linked,” which means the condition is passed down through the
X chromosome.

stands for “hypophosphatemia,”
which means
that the levels of phosphorus in the blood are too
low.

Karabeth, who is living with XLH, sitting down while her mother JoBeth stands behind her with a hand on her shoulder

Karabeth and her mother, JoBeth

Karabeth is living with XLH

WHERE TO GET STARTED

No matter where you are in your XLH journey, you’ll find here
the information and guidance you need to take the next step
with confidence.

TALK WITH SOMEONE WHO UNDERSTANDS XLH

Whether you have XLH or wish to hear more about XLH, you're not alone.

Connect with an XLH Guide—a real person who can help support you and your family with:

Conversation

One-on-one conversations
at a time that works for you

XLH diagnosis

Answers to your everyday
XLH questions

Resources

Resources for where you
are in your XLH journey

All at no cost to you, completely confidential and secure, with no obligations.

talk with an xlh guide

Karabeth and Alice

Both living with XLH

Karabeth and Alice, both living with XLH, looking at a phone together

Could your family members have XLH?

Because XLH is a genetic condition,
other people in your family may have it,
too. Learn how XLH inheritance works,
how to map it in your family, and how to
start conversations about getting care.

Alice and her father Jason, both living with XLH, smiling together

Alice and her father, Jason

Both living with XLH

RESOURCES & COMMUNITY

Resources

Explore resources for people living with XLH

A checklist

Check out upcoming XLH events

COMM-US-RDS-0997 August 2026