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Welcome to the new updated XLHLink.com!
  • Two hands holding up a plastic set of disconnected body parts and symptoms

    Connect your symptoms.
    Is it XLH?

    Connect symptoms of XLH
  • Real XLH patient Emily, her daughter Isla, who also has XLH, and her husband

    Learn how to manage XLH

    Emily and her daughter Isla
    Both living with XLH
  • Group of young professionals talking

    Educate. Empower. Connect.

    Find support through educational resources and the XLH
    community

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X-linked hypophosphatemia (XLH) is rare

XLH is a chronic condition that affects up to 1 in 20,000 people

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Hereditary

XLH is primarily an inherited condition, which means it runs in families.

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Progressive

New symptoms of XLH may appear as you get older and can worsen or change over time.

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Lifelong

Individuals with XLH can continue to experience symptoms throughout their lives.

Discover the cause Discover child symptoms Discover adult symptoms

Start your XLH journey

connect the symptoms of xlh

Are you connecting the symptoms?

Learn about the signs and symptoms of this rare condition and how to get diagnosed.

Symptoms in children Symptoms in adults
Emily and her young daughter Isla, both living with XLH, holding hands on the beach

Manage your condition

Find out what you can do to manage XLH.

Managing XLH
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Living with XLH

Find additional support through educational resources and connect with the XLH community.

Patient resources Caregiver resources

Emily’s journey to diagnosis

“I learned my diagnosis when I was 33 years old because I realized there was something not quite right with my little girl. Her legs were very bowed, and I knew that something wasn’t right.”

Find out if your symptoms are connected to XLH.

Learn about diagnosis
Emily holding her young daughter Isla, both living with XLH

Emily and her daughter Isla
Both living with XLH

Join the community

Sign up to receive helpful resources, get important event invites, and hear real patient stories that will support you on your journey.

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