# XLH UK

## Details

- **Country:** England &amp; 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&amp;p_p_lifecycle=0&amp;p_p_state=maximized&amp;p_p_mode=view&amp;_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1196811


## Contact

- **Address:** 61A Bridge Street, KINGTON, Herefordshire
- **Postcode:** HR5 3DJ
- **Phone:** 07905 115944
- **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



## Geography

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





## Trustees

| Name | Role | Appointed |
|---|---|---|
| **Sarah Mitson** | Chair | Aug. 12, 2022 |
| Claire Jayne Lewis |  | July 2, 2024 |
| Dean William Derek Fletcher |  | July 28, 2025 |
| Oliver Gardiner |  | Nov. 29, 2021 |
| Sally Shaw |  | Nov. 29, 2021 |




