XLH Resources

A family living with XLH

Being affected with a rare condition or being a parent or caregiver of a child with a rare condition can be daunting and life-changing. Equipping yourself with knowledge and information is a great first step towards managing the symptoms of XLH. Here are some more educational resources to help support you.

XLH Patient Brochure

Learn about the basics of XLH by downloading this resource.


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GENETIC TESTING FOR HYPOPHOSPHATEMIA

Learn about genetic testing for hypophosphatemia and get tips for speaking with your doctor.


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SPONSORED GENETIC COUNSELING

Learn about a program offering no-charge genetic counseling to eligible patients with XLH and their caregivers.


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CAREGIVER RESOURCE BROCHURE

This resource is for people caring for or living with someone with XLH and provides tips and support to help them better manage their day-to-day and live well together.


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ASSESS YOUR CHILD’S GROWTH

Short stature is common in people with XLH and this can have a lasting mental and emotional impact. Use the tools in this resource to calculate your child’s height and learn more about how height is connected to genetics and XLH.


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XLH MONITORING GUIDE

This brochure gives you information about symptom progression and what you can expect as you monitor your or your child’s condition over time.


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See the many faces of XLH.

Cheryl talks about staying positive to manage XLH

Meet Cheryl

“I can’t control the symptoms of my XLH, but I can control my attitude.”

You just have to check-in with your own body...I think the point should be to be have a good life.

Meet Gini

“You just have to check-in with your own body…I think the point should be to be have a good life.”

Each we day we have to do a lot of things but XLH has made us stronger, better people.

Meet Melissa and Dillin

“Each day we have to do a lot of things but XLH has made us stronger, better people.”

Learn about the role of phosphate in the body

The importance of phosphate in children with XLH

Learn about the role of phosphate in the body

Sean and James Cooney

“Living with XLH is a silent pain.”

Meet Natascha

“I try not to let XLH define me but as I get older it does affect a lot of what my days look like.”

Meet Ashley

“As I transitioned into adulthood, it was difficult to know really how to take care of myself.”

Meet Mackenzie and her mother Rhonda

“Living with a rare disease—it just means that I am a human that has an obstacle in their life to overcome.”

 

Ultragenyx-Sponsored Programs

XLH Events Patient Programs

Search for programs for individuals with XLH, families, and caregivers.

Connect with The XLH Network

Hypophosphatemia Genetic Testing

This program offers sponsored, no-charge genetic testing for hypophosphatemia disorders for eligible patients.

XLH Genetic Counseling

This program offers sponsored, no-charge genetic counseling support for eligible patients and their families.

Beyond XLH

BEYOND XLH is an online disease-monitoring program for patients with X-linked hypophosphatemia (XLH) and other chronic hypophosphatemic disorders.

 

Other Resources

The XLH Network

Connecting with the XLH community may provide additional insight and support for patients, parents, and caregivers. The XLH Network is a worldwide community of XLH patients, parents, caregivers, and medical professionals.

Connect with The XLH Network

NIH Genetic and Rare Diseases Information Center (GARD)

GARD maintains a list of rare diseases and related terms to help people find reliable information.

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

Global Genes

Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connection and resources.

 

Ultragenyx-sponsored Social Resources

Subscribe to XLH Link on YouTube

Hear from people who are living with XLH as well as the physicians who treat them on the XLH Link YouTube channel. The channel provides important information for people who have XLH, their families, and healthcare providers.

Subscribe to XLH Link on YouTube

Like XLH Link on Facebook

Connect with others in the XLH community and learn about the latest resources and support on the XLH Link Facebook page.

Like XLH Link on Facebook

Follow XLH Link on Instagram

Learn about the latest resources, available support, and experiences of those living with XLH on the XLH Link Instagram page.

Follow XLH Link on Instagram