Call to Action #1

We need your help! Join the RUDY Study so that health care assessors can better understand the impact of XLH.
Your input will drive research so that better treatments can be available. Join here!

Call to Action #2

Over the coming months, we will be collecting case studies to support an upcoming NICE appraisal and for raising awareness of XLH in the community.
If you would be willing to have your story included, please email:
XLH UK support those with XLH and related disorders.

Help us achieve our charitable aims


XLH is an inherited disease, which means it runs in families. In some cases, XLH may occur spontaneously.


New symptoms of XLH may appear at any age and can worsen over time.


Individuals with XLH will continue to experience symptoms throughout life. These symptoms may be managed.
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Video credit: Ultragenyx Pharmaceutical Inc
Watch the video to learn more about XLH.

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!

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Our Partners

Rare disease initiatives and organisations that we collaborate with.