Resources
A family living with XLH
Looking for more information
about X-linked hypophosphatemia (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.
XLH WEBSITES
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.
Linked Xperience Patient Programs
Search for XLH patient programs happening near you.
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.
DOWNLOADABLE RESOURCES
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.
GENETIC TESTING FOR HYPOPHOSPHATEMIA
Learn about genetic testing for hypophosphatemia and get tips for speaking with your doctor
SPONSORED GENETIC COUNSELING
Learn about a program offering no-cost genetic counseling to eligible patients with XLH and their caregivers
PATIENT VIDEOS
See the many faces of XLH.
Meet Cheryl
“I can’t control the symptoms of my XLH, but I can control my attitude.”
Meet Gini
“You just have to check-in with your own body…I think the point should be to be have a good life.”
Meet Melissa and Dillin
“Each we day we have to do a lot of things but XLH has made us stronger, better people.”
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.”
