The XLH Network - Your support network for
X-Linked Hypophosphatemia

Mission Statement

The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.

(To see more information on our mission and vision click here.)

X-Linked Hypophosphatemia is not often seen, so not a lot of information is available. It's a condition that is usually diagnosed in children, but being unusual it is often misdiagnosed or in milder cases may not be focused on by the physician or family. 

Specific tests are needed to know what is causing the problem. XLH is rare, so most doctors will never see it. If you or your child has been diagnosed with XLH, or if you think your child might have it, you need to find a doctor and facility experienced in recognizing it and dealing with it. It’s important that it’s treated properly, and that takes someone with XLH experience

Welcome to the XLH Network. If you’re dealing with XLH – also known as X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) and even Genetic Rickets – you know the fear of not knowing what to do or where to turn.

We know that fear. We’ve been there. We started this network because our own loved ones have it.  We’re here to help. Please let us.

XLH Network Survey

The XLH Network is currently in a year-long process of working to grow our organization and better meet the needs of the XLH community. As part of our initiatives, we have designed a survey in hopes of getting feedback from our members. Your feedback is invaluable, and it will allow us to think strategically about how to best advocate for XLH patients and families.

You can reach the survey through the following link:

https://www.surveymonkey.com/s/XLH_Network

We expect the survey to take no more than fifteen minutes of your time, and we appreciate your input!