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.
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 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.”
“I try not to let XLH define me but as I get older it does affect a lot of what my days look like.”
“As I transitioned into adulthood, it was difficult to know really how to take care of myself.”
“Living with a rare disease—it just means that I am a human that has an obstacle in their life to overcome.”
Search for programs for individuals with XLH, families, and caregivers.
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.
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.
Connect with others in the XLH community and learn about the latest resources and support on the XLH Link Facebook page.
Learn about the latest resources, available support, and experiences of those living with XLH on the XLH Link Instagram page.