CCEW Charity Commission profile

CDKL5 UK

Registered charity 1207922 · organisation 5237173

01 Identity

Registration and reporting

Registration status
Registered
Reporting status
Submission Received
Charity type
CIO
Registered
18 April 2024
Removed
Not supplied
Financial period
18 April 2024 – 31 March 2025
Latest income
£60,140
Latest expenditure
£29,130
Gift Aid
No
Owns or uses land
No
In administration
No
Insolvent
No
CIO
Yes

Public contact address: Henleaze Business Centre, Henleaze House, 13 Harbury Road, BRISTOL, BS9 4PN

Website recorded by the regulator: www.curecdkl5.org.uk (displayed as text)

02 Activities

What the charity does

To preserve and protect the health of individuals diagnosed with and affected by CDKL5 in particular by, providing assistance and advocacy in the form of support groups for the patient community. Providing up to date and relevant information to individuals and their representatives diagnosed with the condition.

03 Official extract

Charity Annual Return History

Fin Period Start Date
18 April 2024
Fin Period End Date
31 March 2025
Ar Cycle Reference
AR25
Reporting Due Date
31 January 2026
Date Annual Return Received
26 January 2026
Date Accounts Received
26 January 2026
Total Gross Income
£60,140
Total Gross Expenditure
£29,130

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
18 April 2024
Fin Period End Date
31 March 2025
Ar Due Date
31 January 2026
Ar Received Date
26 January 2026
Total Gross Income
£60,140
Total Gross Expenditure
£29,130
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

05 Official extract

Charity Area Of Operation

Geographic Area Type
Region
Geographic Area Description
Throughout England And Wales
Welsh Ind
No
Geographic Area Type
Country
Geographic Area Description
Isle Of Man
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
Country
Geographic Area Description
Jersey
Parent Geographic Area Type
Continent
Parent Geographic Area Description
Europe
Welsh Ind
No
Geographic Area Type
Country
Geographic Area Description
Northern Ireland
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
302
Classification Type
How
Classification Description
Makes Grants To Organisations
Classification Code
203
Classification Type
Who
Classification Description
People With Disabilities
Classification Code
205
Classification Type
Who
Classification Description
Other Charities Or Voluntary Bodies
Classification Code
104
Classification Type
What
Classification Description
Disability
Classification Code
307
Classification Type
How
Classification Description
Provides Advocacy/advice/information
Classification Code
306
Classification Type
How
Classification Description
Provides Services
Classification Code
204
Classification Type
Who
Classification Description
People Of A Particular Ethnic Or Racial Origin

07 Official extract

Charity Event History

Charity Name
CDKL5 UK
Charity Event Order
1
Event Type
CIO registration
Date Of Event
2024-04-18T00:00:00
Charity Name
CDKL5 UK
Charity Event Order
2
Event Type
Asset transfer in
Date Of Event
2024-06-17T00:00:00
Reason
Transfer of funds
Assoc Organisation Number
5031035
Assoc Registered Charity Number
1149099
Assoc Charity Name
CDKL5 UK

08 Official extract

Charity Governing Document

Governing Document Description
CIO - FOUNDATION Registered 18 Apr 2024
Charitable Objects
THE OBJECTS OF THE CIO ARETO PRESERVE AND PROTECT THE HEALTH OF INDIVIDUALS DIAGNOSED WITH AND AFFECTED BY CDKL5 IN PARTICULAR BY:A PROVIDING ASSISTANCE AND ADVOCACY IN THE FORM OF SUPPORT GROUPS FOR THE PATIENT COMMUNITY.B PROVIDING UP TO DATE AND RELEVANT INFORMATION TO INDIVIDUALS AND THEIR REPRESENTATIVE DIAGNOSED WITH THE CONDITION AND TO MEDICAL PROFESSIONALS AS A MEANS OF IMPROVING UNDERSTANDING AND RAISING AWARENESS OF CDKL5 C PROMOTING AND SUPPORT RESEARCH IN CDKL5

09 Official extract

Charity Policy

Policy Name
Social media policy and procedures
Policy Name
Trustee conflicts of interest policy and procedures
Policy Name
Complaints policy and procedures
Policy Name
Financial reserves policy and procedures
Policy Name
Volunteer management
Policy Name
Risk management
Policy Name
Trustee expenses policy and procedures
Policy Name
Safeguarding policy and procedures
Policy Name
Bullying and harassment policy and procedures
Policy Name
Internal risk management policy and procedures
Policy Name
Internal charity financial controls policy and procedures