Country

England & Wales

Charity number

1196811

Status

Registered

Registered

Nov. 29, 2021

Legal form

CIO

Address

Contact

Phone

07905115944

Email

[email protected]

Website

xlhuk.org

Activities

XLH UK exists to help those with X-linked hypophosphatemia (XLH) and their families living in the UK. We organise events and maintain a website with resources and news. We raise awareness by sharing stories of the lived experience. We also contribute to research into the multiple aspects of this rare condition, to better inform the development of new treatments and standards for best care.

Objects: The Preservation Of Good Health Among Sufferers Of X-Linked Hypophosphatemia And Related Disorders By:a) Supporting Research For The Public Benefit Into The Causes, Prevention, Diagnosis And Methods Of Treatment Of X-Linked Hypophosphatemia And Related Disorders And Publishing The Useful Results Of That Research;b) Provision Of A Support Network For Families Suffering From The Effects Of X-Linked Hypophosphatemia And Related Disorders; C) Advocating Early Diagnosis And Well-Managed Treatment Of X-Linked Hypophosphatemia And Related Disorders.

Classification

How

Provides Advocacy/advice/information

What

The Advancement Of Health Or Saving Of Lives

Who

People With Disabilities

Areas of operation

Country

Guernsey, Ireland, Isle Of Man, Jersey, Northern Ireland, Scotland

Region

Throughout England And Wales

Finances

Trustees

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