BARTH SYNDROME UK — Charity Commission profile

01 Identity

Registration and reporting

Registration status: Registered
Reporting status: Submission Received
Charity type: CIO
Registered: 31 January 2019
Removed: Not supplied
Financial period: 1 January 2025 – 31 December 2025
Latest income: £58,080
Latest expenditure: £36,586
Gift Aid: Yes
Owns or uses land: No
In administration: No
Insolvent: No
CIO: Yes

Public contact address: 1 THE VIKINGS, ROMSEY, SO51 5RG

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

02 Activities

What the charity does

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.

03 Official extract

Charity Annual Return History

Fin Period Start Date: 1 January 2025
Fin Period End Date: 31 December 2025
Ar Cycle Reference: AR25
Reporting Due Date: 31 October 2026
Date Annual Return Received: 8 March 2026
Date Accounts Received: 8 March 2026
Total Gross Income: £58,080
Total Gross Expenditure: £36,586

Fin Period Start Date: 1 January 2024
Fin Period End Date: 31 December 2024
Ar Cycle Reference: AR24
Reporting Due Date: 31 October 2025
Date Annual Return Received: 31 October 2025
Date Accounts Received: 31 October 2025
Total Gross Income: £25,067
Total Gross Expenditure: £33,206

Fin Period Start Date: 1 January 2023
Fin Period End Date: 31 December 2023
Ar Cycle Reference: AR23
Reporting Due Date: 31 October 2024
Date Annual Return Received: 18 March 2024
Date Accounts Received: 18 March 2024
Total Gross Income: £79,374
Total Gross Expenditure: £60,567

Fin Period Start Date: 1 January 2022
Fin Period End Date: 31 December 2022
Ar Cycle Reference: AR22
Reporting Due Date: 31 October 2023
Date Annual Return Received: 2 March 2023
Date Accounts Received: 2 March 2023
Total Gross Income: £11,845
Total Gross Expenditure: £46,135

Fin Period Start Date: 1 January 2021
Fin Period End Date: 31 December 2021
Ar Cycle Reference: AR21
Reporting Due Date: 31 October 2022
Date Annual Return Received: 8 March 2022
Date Accounts Received: 8 March 2022
Total Gross Income: £31,007
Total Gross Expenditure: £44,840

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 January 2025
Fin Period End Date: 31 December 2025
Ar Due Date: 31 October 2026
Ar Received Date: 8 March 2026
Total Gross Income: £58,080
Total Gross Expenditure: £36,586
Grant Making Is Main Activity: No
Count Govt Contracts: 0
Count Govt Grants: £0
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: 0

Latest Fin Period Submitted Ind: No
Fin Period Order Number: 2
Ar Cycle Reference: AR24
Fin Period Start Date: 1 January 2024
Fin Period End Date: 31 December 2024
Ar Due Date: 31 October 2025
Ar Received Date: 31 October 2025
Total Gross Income: £25,067
Total Gross Expenditure: £33,206
Grant Making Is Main Activity: No
Count Govt Contracts: 0
Count Govt Grants: £0
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: 1

Latest Fin Period Submitted Ind: No
Fin Period Order Number: 3
Ar Cycle Reference: AR23
Fin Period Start Date: 1 January 2023
Fin Period End Date: 31 December 2023
Ar Due Date: 31 October 2024
Ar Received Date: 18 March 2024
Total Gross Income: £79,374
Total Gross Expenditure: £60,567
Grant Making Is Main Activity: No
Count Govt Contracts: 0
Count Govt Grants: £0
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: 3

Latest Fin Period Submitted Ind: No
Fin Period Order Number: 4
Ar Cycle Reference: AR22
Fin Period Start Date: 1 January 2022
Fin Period End Date: 31 December 2022
Ar Due Date: 31 October 2023
Ar Received Date: 2 March 2023
Total Gross Income: £11,845
Total Gross Expenditure: £46,135
Charity Raises Funds From Public: Yes
Charity Professional Fundraiser: No
Charity Commercial Participator: No
Grant Making Is Main Activity: No
Charity Receives Govt Funding Contracts: No
Charity Receives Govt Funding Grants: No
Charity Has Trading Subsidiary: No
Does Trustee Receive Any Benefit: No
Trustee Resigned Employment: No
Employees Salary Over 60k: No
Count Volunteers: 2

Latest Fin Period Submitted Ind: No
Fin Period Order Number: 5
Ar Cycle Reference: AR21
Fin Period Start Date: 1 January 2021
Fin Period End Date: 31 December 2021
Ar Due Date: 31 October 2022
Ar Received Date: 8 March 2022
Total Gross Income: £31,007
Total Gross Expenditure: £44,840
Charity Raises Funds From Public: Yes
Charity Professional Fundraiser: No
Charity Commercial Participator: No
Grant Making Is Main Activity: No
Charity Receives Govt Funding Contracts: No
Charity Receives Govt Funding Grants: No
Charity Has Trading Subsidiary: No
Does Trustee Receive Any Benefit: No
Trustee Resigned Employment: No
Employees Salary Over 60k: No
Count Volunteers: 3

05 Official extract

Charity Area Of Operation

Geographic Area Type: Country
Geographic Area Description: Ireland
Parent Geographic Area Type: Continent
Parent Geographic Area Description: Europe
Welsh Ind: No

Geographic Area Type: Country
Geographic Area Description: Scotland
Parent Geographic Area Type: Continent
Parent Geographic Area Description: Europe
Welsh Ind: No

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

Geographic Area Type: Country
Geographic Area Description: United States
Parent Geographic Area Type: Continent
Parent Geographic Area Description: North America
Welsh Ind: No

06 Official extract

Charity Classification

Classification Code: 203
Classification Type: Who
Classification Description: People With Disabilities

Classification Code: 201
Classification Type: Who
Classification Description: Children/young People

Classification Code: 308
Classification Type: How
Classification Description: Sponsors Or Undertakes Research

Classification Code: 101
Classification Type: What
Classification Description: General Charitable Purposes

Classification Code: 302
Classification Type: How
Classification Description: Makes Grants To Organisations

Classification Code: 301
Classification Type: How
Classification Description: Makes Grants To Individuals

Classification Code: 306
Classification Type: How
Classification Description: Provides Services

Classification Code: 307
Classification Type: How
Classification Description: Provides Advocacy/advice/information

Classification Code: 103
Classification Type: What
Classification Description: The Advancement Of Health Or Saving Of Lives

Classification Code: 206
Classification Type: Who
Classification Description: Other Defined Groups

Classification Code: 205
Classification Type: Who
Classification Description: Other Charities Or Voluntary Bodies

07 Official extract

Charity Event History

Charity Name: BARTH SYNDROME UK
Charity Event Order: 2
Event Type: Asset transfer in
Date Of Event: 2020-01-11T00:00:00
Reason: Funds transferred (incor)
Assoc Organisation Number: 4002412
Assoc Registered Charity Number: 1100835
Assoc Charity Name: BARTH SYNDROME TRUST

Charity Name: BARTH SYNDROME UK
Charity Event Order: 1
Event Type: CIO registration
Date Of Event: 2019-01-31T00:00:00

08 Official extract

Charity Governing Document

Governing Document Description: CIO - FOUNDATION Registered 31 Jan 2019
Charitable 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.
Area Of Benefit: WITHIN THE UNITED KINGDOM AND ELSEWHERE IN THE WORLD

09 Official extract

Charity Policy

Policy Name: Risk management

Policy Name: Trustee conflicts of interest policy and procedures

Policy Name: Complaints policy and procedures

Policy Name: Safeguarding vulnerable beneficiaries

Policy Name: Internal charity financial controls policy and procedures

Policy Name: Financial reserves policy and procedures

Policy Name: Volunteer management

Policy Name: Social media policy and procedures

Policy Name: Conflicting interests

Policy Name: Bullying and harassment policy and procedures

Policy Name: Paying staff

Policy Name: Complaints handling

Policy Name: Serious incident reporting policy and procedures

Policy Name: Safeguarding policy and procedures

Policy Name: Internal risk management policy and procedures

Policy Name: Trustee expenses policy and procedures