CCEW Charity Commission profile

BATTEN DISEASE FAMILY ASSOCIATION CIO

Registered charity 1205650 · organisation 5204747

01 Identity

Registration and reporting

Registration status
Registered
Reporting status
Submission Received
Charity type
CIO
Registered
9 November 2023
Removed
Not supplied
Financial period
1 September 2024 – 31 December 2025
Latest income
£491,462
Latest expenditure
£634,269
Owns or uses land
No
In administration
No
Insolvent
No
CIO
Yes

Public contact address: 10 Nidderdale Walk, Baildon, SHIPLEY, West Yorkshire, BD17 6TW

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

02 Activities

What the charity does

A supportive, informative, national networking organisation for the families, carers and professionals giving care to children and adults with Batten Disease and for promoting awareness of, and research into, the disease

03 Official extract

Charity Annual Return History

Fin Period Start Date
1 September 2024
Fin Period End Date
31 December 2025
Ar Cycle Reference
AR25
Reporting Due Date
31 October 2026
Date Annual Return Received
3 June 2026
Date Accounts Received
3 June 2026
Total Gross Income
£491,462
Total Gross Expenditure
£634,269
Fin Period Start Date
9 November 2023
Fin Period End Date
31 August 2024
Ar Cycle Reference
AR24
Reporting Due Date
30 June 2025
Date Annual Return Received
5 June 2025
Date Accounts Received
7 July 2025
Total Gross Income
£0
Total Gross Expenditure
£0

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 September 2024
Fin Period End Date
31 December 2025
Ar Due Date
31 October 2026
Ar Received Date
3 June 2026
Total Gross Income
£491,462
Total Gross Expenditure
£634,269
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
Yes
Count Salary Band 70001 80000
1
Count Volunteers
25
Latest Fin Period Submitted Ind
No
Fin Period Order Number
2
Ar Cycle Reference
AR24
Fin Period Start Date
9 November 2023
Fin Period End Date
31 August 2024
Ar Due Date
30 June 2025
Ar Received Date
5 June 2025
Total Gross Income
£0
Total Gross Expenditure
£0
Grant Making Is Main Activity
Yes
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
Count Volunteers
0

05 Official extract

Charity Area Of Operation

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

06 Official extract

Charity Classification

Classification Code
201
Classification Type
Who
Classification Description
Children/young People
Classification Code
103
Classification Type
What
Classification Description
The Advancement Of Health Or Saving Of Lives
Classification Code
306
Classification Type
How
Classification Description
Provides Services
Classification Code
203
Classification Type
Who
Classification Description
People With Disabilities
Classification Code
104
Classification Type
What
Classification Description
Disability
Classification Code
308
Classification Type
How
Classification Description
Sponsors Or Undertakes Research
Classification Code
102
Classification Type
What
Classification Description
Education/training
Classification Code
307
Classification Type
How
Classification Description
Provides Advocacy/advice/information

07 Official extract

Charity Event History

Charity Name
BATTEN DISEASE FAMILY ASSOCIATION CIO
Charity Event Order
2
Event Type
Asset transfer in
Date Of Event
2025-12-11T00:00:00
Reason
Transfer of funds
Assoc Organisation Number
3974269
Assoc Registered Charity Number
1084908
Assoc Charity Name
BATTEN DISEASE FAMILY ASSOCIATION
Charity Name
BATTEN DISEASE FAMILY ASSOCIATION CIO
Charity Event Order
1
Event Type
CIO registration
Date Of Event
2023-11-09T00:00:00

08 Official extract

Charity Governing Document

Governing Document Description
CIO - ASSOCIATION Registered 09 Nov 2023
Charitable Objects
THE OBJECTS OF THE CIO ARE:TO PRESERVE AND PROTECT THE HEALTH AND WELLBEING OF PERSONS AFFECTED BY ALL TYPES OF NEURONAL CERIOD LIPOFUSCINOSIS (NCL) COMMONLY KNOWN AS BATTEN DISEASE.TO ADVANCE THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC ON THE SUBJECT OF BATTEN DISEASE AND ITS IMPLICATIONS FOR THE FAMILY, IN PARTICULAR BUT NOT EXCLUSIVELY BY SUPPORTING AND CONDUCTING RESEARCH INTO THE MANAGEMENT OF BATTEN DISEASE AND TO PUBLISH THE USEFUL RESULTS THEREOF AND TO SUPPORT ORGANISATIONS PROMOTING RESEARCH INTO BATTEN DISEASE.

09 Official extract

Charity Other Names

Charity Name Id
674400
Charity Name Type
Working name
Charity Name
BDFA

10 Official extract

Charity Policy

Policy Name
Complaints policy and procedures
Policy Name
Paying staff
Policy Name
Financial reserves policy and procedures
Policy Name
Bullying and harassment policy and procedures
Policy Name
Engaging external speakers at charity events policy and procedures
Policy Name
Serious incident reporting policy and procedures
Policy Name
Safeguarding policy and procedures
Policy Name
Social media policy and procedures
Policy Name
Volunteer management
Policy Name
Internal charity financial controls policy and procedures
Policy Name
Safeguarding vulnerable beneficiaries
Policy Name
Investment
Policy Name
Conflicting interests
Policy Name
Investing charity funds policy and procedures
Policy Name
Risk management
Policy Name
Complaints handling
Policy Name
Trustee expenses policy and procedures
Policy Name
Internal risk management policy and procedures
Policy Name
Trustee conflicts of interest policy and procedures