XLH Resources
A family living with XLH
Looking for more information
about X-linked hypophosphatemia (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.
DOWNLOADABLE RESOURCES
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-charge genetic counseling to eligible patients with XLH and their caregivers.
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.
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.
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.
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 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.”
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.”
ONLINE RESOURCES
Ultragenyx-Sponsored Programs
XLH Events Patient Programs
Search for programs for individuals with XLH, families, and caregivers.
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.
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.
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.
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.
