Connect your symptoms.

Welcome to XLH Link! Your premier resource for all things X-linked hypophosphatemia!

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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.

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Discover the cause | Discover child symptoms | Discover adult symptoms

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Start your XLH journey

Are you connecting the symptoms? Learn about the signs and symptoms of this rare condition and how to get diagnosed.

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Symptoms in children | Symptoms in adults

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Manage your condition

Find out what you can do to manage XLH.

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Managing XLH | Living with XLH

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

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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.”

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Find out if your symptoms are connected to XLH.

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Learn about diagnosis

Emily and her daughter Isla - Both living with XLH

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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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