Resources

A family living with XLH

Being affected with a rare disease or being a parent or caregiver of a child with a rare disease 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.

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

Linked Xperience Patient Programs

Search for XLH patient programs happening near you.

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.

Beyond XLH

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

XLH Research Survey

Ultragenyx is conducting an online survey of XLH patients to learn more about the management of XLH. Individuals may receive compensation upon participation. Learn more about the details of the survey and how to participate.

View the instructions

XLH Patient Brochure

Learn about the basics of XLH by downloading this resource

Download

GENETIC TESTING FOR HYPOPHOSPHATEMIA

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

Download

SPONSORED GENETIC COUNSELING

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

Download

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 we 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.”