XLH UK support those with XLH and related disorders.
Hereditary
XLH is an inherited disease, which means it runs in families. In some cases, XLH may occur spontaneously.
Progressive
New symptoms of XLH may appear at any age and can worsen over time.
Lifelong
Individuals with XLH will continue to experience symptoms throughout life. These symptoms may be managed.
Connect with our community
Join our private Facebook group to connect with families alike
Our Events
Find out what's happening in the UK
Across the whole of the UK, the XLH community is raising awareness through a wide range of exciting events and social activities.
If you would like to take part in an event, you can find the perfect one to suit your needs and interests with our events page.
Related news!
Click to learn more about each article.
November 30, 2020
I Am Number Seventeen
October 23, 2020
Webinar on the unrecognised burden of XLH in adults
September 24, 2020
XLH UK features in the New Scientist magazine
Our Partners
Rare disease initiatives and organisations that we collaborate with.
