# BARDET-BIEDL SYNDROME UK (BBS UK)

## Details

- **Country:** England &amp; 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&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=1181244


## Contact

- **Address:** 43 BALTON WAY, HARWICH
- **Postcode:** CO12 4UP
- **Phone:** 07591 206680
- **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



## Geography

- Throughout England And Wales





## Trustees

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




