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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: CaseStudy@xlhuk.org
XLH UK support those with XLH and related disorders.
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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.
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Video credit: Ultragenyx Pharmaceutical Inc
Watch the video to learn more about XLH.

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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.

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Related news!

Click to learn more about each article.
August 8, 2022
Family Day Update
July 27, 2022
International XLH Alliance Patient Group Meeting
July 24, 2022
3rd International XLH Symposium
February 25, 2022
XLH UK adult care webinar #2
February 14, 2022
XLH UK adult care webinar #1

Our Partners

Rare disease initiatives and organisations that we collaborate with.
Rudy Study