XLH Resources
A family living with XLH
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.
Learn about genetic testing for hypophosphatemia and get tips for speaking with your doctor
Learn about a program offering no-charge genetic counseling to eligible patients with XLH and their caregivers
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.
See the many faces of XLH.
“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.”
“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
“Living with XLH is a silent pain.”
Search for XLH patient programs happening near you.
This program offers sponsored, no-charge genetic testing for hypophosphatemia disorders for eligible patients.
This program offers sponsored, no-charge genetic counseling support for eligible patients and their families.
BEYOND XLH is an online disease-monitoring program for patients with X-linked hypophosphatemia (XLH) and other chronic hypophosphatemic disorders.
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.
GARD maintains a list of rare diseases and related terms to help people find reliable information.
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connection and resources.