# BARTH SYNDROME UK

## Details

- **Country:** England &amp; Wales
- **Charity number:** 1181830
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Jan. 31, 2019
- **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=1181830


## Contact

- **Address:** 1 THE VIKINGS, ROMSEY
- **Postcode:** SO51 5RG
- **Phone:** 01794 518785
- **Email:** info@barthsyndrome.org.uk
- **Website:** www.barthsyndrome.org.uk



## Activities

**Objects:** THE RELIEF OF INDIVIDUALS WITH, AND CARRIERS OF, BARTH SYNDROME AND THEIR FAMILIES, WITHIN THE UNITED KINGDOM AND ELSEWHERE IN THE WORLD IN PARTICULAR BUT NOT EXCLUSIVELY BY:A) PROVIDING ACCESS TO INFORMATION, ADVICE AND SUPPORT IN RELATION TO THE CONDITION TO THE PUBLIC AND, IN PARTICULAR, DIAGNOSED INDIVIDUALS AND THEIR EXTENDED FAMILIES AND THOSE IN THE EDUCATIONAL, SCIENTIFIC, MEDICAL AND ALLIED HEALTH CARE PROFESSIONS.B) THE PROMOTION AND FUNDING OF RESEARCH INTO THE CAUSES AND EFFECTS OF THE CONDITION AND THE DISSEMINATION OF THE USEFUL RESULTS OF THE SAME FOR THE BENEFIT OF THE PUBLIC.

**Activities:** Working throughout the UK, we assist families with Barth syndrome with support, information and access to expert care.We fund research into treatments and a cure.




## Classification

- **How:** Makes Grants To Individuals, Makes Grants To Organisations, Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
- **What:** General Charitable Purposes, The Advancement Of Health Or Saving Of Lives
- **Who:** Children/young People, People With Disabilities, Other Charities Or Voluntary Bodies, Other Defined Groups



## Geography

- **Area of benefit:** WITHIN THE UNITED KINGDOM AND ELSEWHERE IN THE WORLD
- Ireland
- Scotland
- United States
- Throughout England And Wales





## Trustees

| Name | Role | Appointed |
|---|---|---|
| **RALPH STEVEN EASTERBROOK** | Chair | Aug. 14, 2022 |
| Kelsey Leigh Doran |  | Oct. 19, 2022 |
| Paul Laurence Ford |  | Jan. 17, 2024 |
| Susan Williams |  | Oct. 2, 2025 |
| Suzanne Michelle Green |  | Aug. 10, 2023 |




