# BARDET-BIEDL SYNDROME UK (BBS UK)

## Details

- **Country:** England & Wales
- **Charity number:** 1181244
- **Other names:** BARDET-BIEDL SYNDROME UK, BBS UK
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Dec. 18, 2018
- **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=1181244


## Contact

- **Address:** 43 BALTON WAY, HARWICH
- **Postcode:** CO12 4UP
- **Phone:** 07591206680
- **Email:** admin@bbsuk.org.uk
- **Website:** www.bbsuk.org.uk



## Activities

**Objects:** THE OBJECTS OF THE CIO ARE:(A) TO PRESERVE AND PROTECT THE HEALTH AND PROMOTE THE WELFARE OF PERSONS DIAGNOSED WITH BARDET-BIEDL SYNDROME AND THEIR FAMILIES;(B) TO ADVANCE THE EDUCATION OF THE MEDICAL AND EDUCATIONAL PROFESSIONS AND THE GENERAL PUBLIC ON THE SUBJECT OF BARDET-BIEDL SYNDROME AND ITS IMPLICATIONS FOR THE FAMILY AND TO PROMOTE RESEARCH FOR THE PUBLIC BENEFIT IN ALL ASPECTS OF THAT SUBJECT AND TO PUBLISH THE USEFUL RESULTS.

**Activities:** BBS UK provides support, information and advocacy services.  It organises an annual family conference, a family activity weekend and social weekend for adults living with the syndrome.  The charity maintains a website and produces twice-yearly newsletters, an annual Conference Report, information leaflets and online resources.




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
- **What:** General Charitable Purposes, The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Children/young People, People With Disabilities



## Areas of operation

- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| March 31, 2025 | £395748 | £294676 | — | — |
| March 31, 2024 | £315787 | £279165 | — | — |
| March 31, 2023 | £242781 | £250141 | — | — |
| March 31, 2022 | £154564 | £93539 | — | — |
| Dec. 31, 2020 | £53704 | £55174 | — | — |



## Trustees

- Bilaal Ali — appointed Nov. 9, 2024
- Chetankumar Meshram — appointed Sept. 24, 2023
- DIANNE JULIE HAND — appointed Dec. 18, 2018
- Dr Shehla Mohammed — appointed July 13, 2021
- Emma Hughes — appointed Nov. 9, 2024
- Gareth Owens — appointed Sept. 24, 2023
- Liam Wilkie — appointed July 13, 2021
- Natasha Murray — appointed Nov. 8, 2025
- RACHAEL  ANNE Zimbler — appointed Dec. 18, 2018