CCEW Charity Commission profile

BARDET-BIEDL SYNDROME UK (BBS UK)

Registered charity 1181244 · organisation 5123433

01 Identity

Registration and reporting

Registration status
Registered
Reporting status
Submission Received
Charity type
CIO
Registered
18 December 2018
Removed
Not supplied
Financial period
1 April 2024 – 31 March 2025
Latest income
£395,748
Latest expenditure
£294,676
Gift Aid
Yes
Owns or uses land
No
In administration
No
Insolvent
No
CIO
Yes

Public contact address: 43 BALTON WAY, HARWICH, CO12 4UP

Website recorded by the regulator: www.bbsuk.org.uk (displayed as text)

02 Activities

What the charity does

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.

03 Official extract

Charity Annual Return History

Fin Period Start Date
1 April 2024
Fin Period End Date
31 March 2025
Ar Cycle Reference
AR25
Reporting Due Date
31 January 2026
Date Annual Return Received
24 October 2025
Date Accounts Received
24 October 2025
Total Gross Income
£395,748
Total Gross Expenditure
£294,676
Fin Period Start Date
1 April 2023
Fin Period End Date
31 March 2024
Ar Cycle Reference
AR24
Reporting Due Date
31 January 2025
Date Annual Return Received
19 November 2024
Date Accounts Received
19 November 2024
Total Gross Income
£315,787
Total Gross Expenditure
£279,165
Fin Period Start Date
1 April 2022
Fin Period End Date
31 March 2023
Ar Cycle Reference
AR23
Reporting Due Date
31 January 2024
Date Annual Return Received
13 November 2023
Date Accounts Received
13 November 2023
Total Gross Income
£242,781
Total Gross Expenditure
£250,141
Fin Period Start Date
1 January 2021
Fin Period End Date
31 March 2022
Ar Cycle Reference
AR22
Reporting Due Date
31 January 2023
Date Annual Return Received
14 December 2022
Date Accounts Received
14 December 2022
Total Gross Income
£154,564
Total Gross Expenditure
£93,539
Fin Period Start Date
1 January 2020
Fin Period End Date
31 December 2020
Ar Cycle Reference
AR20
Reporting Due Date
31 October 2021
Date Annual Return Received
12 August 2021
Date Accounts Received
12 August 2021
Total Gross Income
£53,704
Total Gross Expenditure
£55,174

04 Official extract

Charity Annual Return Parta

Latest Fin Period Submitted Ind
Yes
Fin Period Order Number
1
Ar Cycle Reference
AR25
Fin Period Start Date
1 April 2024
Fin Period End Date
31 March 2025
Ar Due Date
31 January 2026
Ar Received Date
24 October 2025
Total Gross Income
£395,748
Total Gross Expenditure
£294,676
Grant Making Is Main Activity
No
Count Govt Contracts
1
Count Govt Grants
£0
Income From Government Contracts
205208
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
No
Does Trustee Receive Any Benefit
No
Trustee Payments Acting As Trustee
No
Trustee Receives Payments Services
No
Trustee Receives Other Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
10
Latest Fin Period Submitted Ind
No
Fin Period Order Number
2
Ar Cycle Reference
AR24
Fin Period Start Date
1 April 2023
Fin Period End Date
31 March 2024
Ar Due Date
31 January 2025
Ar Received Date
19 November 2024
Total Gross Income
£315,787
Total Gross Expenditure
£279,165
Grant Making Is Main Activity
No
Count Govt Contracts
1
Count Govt Grants
£0
Income From Government Contracts
171107
Charity Has Trading Subsidiary
No
Does Trustee Receive Any Benefit
No
Trustee Payments Acting As Trustee
No
Trustee Receives Payments Services
No
Trustee Receives Other Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
10
Latest Fin Period Submitted Ind
No
Fin Period Order Number
3
Ar Cycle Reference
AR23
Fin Period Start Date
1 April 2022
Fin Period End Date
31 March 2023
Ar Due Date
31 January 2024
Ar Received Date
13 November 2023
Total Gross Income
£242,781
Total Gross Expenditure
£250,141
Grant Making Is Main Activity
No
Count Govt Contracts
1
Count Govt Grants
£0
Income From Government Contracts
162357
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Payments Acting As Trustee
No
Trustee Receives Payments Services
No
Trustee Receives Other Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
12
Latest Fin Period Submitted Ind
No
Fin Period Order Number
4
Ar Cycle Reference
AR22
Fin Period Start Date
1 January 2021
Fin Period End Date
31 March 2022
Ar Due Date
31 January 2023
Ar Received Date
14 December 2022
Total Gross Income
£154,564
Total Gross Expenditure
£93,539
Charity Raises Funds From Public
Yes
Charity Professional Fundraiser
No
Charity Commercial Participator
No
Charity Receives Govt Funding Contracts
No
Charity Receives Govt Funding Grants
No
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
10
Latest Fin Period Submitted Ind
No
Fin Period Order Number
5
Ar Cycle Reference
AR20
Fin Period Start Date
1 January 2020
Fin Period End Date
31 December 2020
Ar Due Date
31 October 2021
Ar Received Date
12 August 2021
Total Gross Income
£53,704
Total Gross Expenditure
£55,174
Charity Raises Funds From Public
Yes
Charity Professional Fundraiser
No
Charity Commercial Participator
No
Charity Receives Govt Funding Contracts
No
Charity Receives Govt Funding Grants
No
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
0

05 Official extract

Charity Area Of Operation

Geographic Area Type
Region
Geographic Area Description
Throughout England And Wales
Welsh Ind
No

06 Official extract

Charity Classification

Classification Code
104
Classification Type
What
Classification Description
Disability
Classification Code
306
Classification Type
How
Classification Description
Provides Services
Classification Code
103
Classification Type
What
Classification Description
The Advancement Of Health Or Saving Of Lives
Classification Code
101
Classification Type
What
Classification Description
General Charitable Purposes
Classification Code
308
Classification Type
How
Classification Description
Sponsors Or Undertakes Research
Classification Code
201
Classification Type
Who
Classification Description
Children/young People
Classification Code
203
Classification Type
Who
Classification Description
People With Disabilities
Classification Code
307
Classification Type
How
Classification Description
Provides Advocacy/advice/information

07 Official extract

Charity Event History

Charity Name
BARDET-BIEDL SYNDROME UK (BBS UK)
Charity Event Order
1
Event Type
CIO registration
Date Of Event
2018-12-18T00:00:00
Charity Name
BARDET-BIEDL SYNDROME UK (BBS UK)
Charity Event Order
2
Event Type
Asset transfer in
Date Of Event
2020-12-23T00:00:00
Assoc Organisation Number
1027384
Assoc Registered Charity Number
1027384
Assoc Charity Name
BARDET - BIEDL SYNDROME UK

08 Official extract

Charity Governing Document

Governing Document Description
CIO - ASSOCIATION Registered 18 Dec 2018
Charitable 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.

09 Official extract

Charity Other Names

Charity Name Id
603578
Charity Name Type
Working name
Charity Name
BARDET-BIEDL SYNDROME UK
Charity Name Id
603579
Charity Name Type
Working name
Charity Name
BBS UK

10 Official extract

Charity Policy

Policy Name
Trustee conflicts of interest policy and procedures
Policy Name
Risk management
Policy Name
Paying staff
Policy Name
Bullying and harassment policy and procedures
Policy Name
Complaints handling
Policy Name
Complaints policy and procedures
Policy Name
Internal charity financial controls policy and procedures
Policy Name
Trustee expenses policy and procedures
Policy Name
Financial reserves policy and procedures
Policy Name
Conflicting interests
Policy Name
Safeguarding vulnerable beneficiaries
Policy Name
Volunteer management
Policy Name
Social media policy and procedures
Policy Name
Internal risk management policy and procedures
Policy Name
Safeguarding policy and procedures