# XLH UK

## Details

- **Country:** England & Wales
- **Charity number:** 1196811
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Nov. 29, 2021
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=0&p_p_state=maximized&p_p_mode=view&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1196811


## Contact

- **Address:** 61A Bridge Street, KINGTON, Herefordshire
- **Postcode:** HR5 3DJ
- **Phone:** 07905115944
- **Email:** contact@xlhuk.org
- **Website:** https://xlhuk.org/



## Activities

**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.

**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.




## Classification

- **How:** Provides Advocacy/advice/information
- **What:** The Advancement Of Health Or Saving Of Lives
- **Who:** People With Disabilities



## Areas of operation

- Guernsey
- Ireland
- Isle Of Man
- Jersey
- Northern Ireland
- Scotland
- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| Jan. 31, 2025 | £13252 | £15824 | — | — |
| Jan. 31, 2024 | £18408 | £24359 | — | — |
| Jan. 31, 2023 | £23082 | £27539 | — | — |



## Trustees

- **Sarah Mitson** (Chair) — appointed Aug. 12, 2022
- Claire Jayne Lewis — appointed July 2, 2024
- Dean William Derek Fletcher — appointed July 28, 2025
- Oliver Gardiner — appointed Nov. 29, 2021
- Sally Shaw — appointed Nov. 29, 2021