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Call to Action!

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!
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.
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.
November 30, 2020
I Am Number Seventeen
October 23, 2020
Webinar on the unrecognised burden of XLH in adults
October 1, 2020
Clinical guidelines for burosumab in the treatment of XLH in children and adolescents: British paediatric and adolescent bone group recommendations
September 24, 2020
XLH UK features in the New Scientist magazine
May 21, 2020
Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance

Our Partners

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