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

The International XLH Alliance is conducting a survey among all adults with X-linked hypophosphataemia (XLH) throughout the world.
This survey is conducted to help support the 2021 international XLH awareness campaign that focuses on XLH care, management and treatment. Please partake here
XLH UK support those with XLH and related disorders.

Help us achieve our charitable aims

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.

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.

Our Partners

Rare disease initiatives and organisations that we collaborate with.