01 Identity
Registration and reporting
- Registration status
- Registered
- Reporting status
- Submission Received
- Charity type
- CIO
- Registered
- 30 April 2024
- Removed
- Not supplied
- Financial period
- 1 January 2025 – 31 December 2025
- Latest income
- £15,339
- Latest expenditure
- £2,012
- Owns or uses land
- No
- In administration
- No
- Insolvent
- No
- CIO
- Yes
Public contact address: 3-4 spire house, waterside business park, ashbourne, DE6 1DG
Website recorded by the regulator: www.kleefstrasyndrome.org (displayed as text)
02 Activities
What the charity does
The relief of Kleefstra Syndrome by: increasing awareness of Kleefstra Syndrome in the UK; promoting research into the causes, effects, treatment and management of Kleefstra Syndrome and disseminating and publishing the useful results of any such research; and providing help and support to families affected by the Syndrome
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
- 9 June 2026
- Date Accounts Received
- 9 June 2026
- Total Gross Income
- £15,339
- Total Gross Expenditure
- £2,012
- Fin Period Start Date
- 30 April 2024
- Fin Period End Date
- 31 December 2024
- Ar Cycle Reference
- AR24
- Reporting Due Date
- 31 October 2025
- Date Annual Return Received
- 12 September 2025
- Date Accounts Received
- 12 September 2025
- Total Gross Income
- £3,587
- Total Gross Expenditure
- £13,271
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
- 9 June 2026
- Total Gross Income
- £15,339
- Total Gross Expenditure
- £2,012
- 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
- Count Volunteers
- 5
- Latest Fin Period Submitted Ind
- No
- Fin Period Order Number
- 2
- Ar Cycle Reference
- AR24
- Fin Period Start Date
- 30 April 2024
- Fin Period End Date
- 31 December 2024
- Ar Due Date
- 31 October 2025
- Ar Received Date
- 12 September 2025
- Total Gross Income
- £3,587
- Total Gross Expenditure
- £13,271
- 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
- Count Volunteers
- 5
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
- 307
- Classification Type
- How
- Classification Description
- Provides Advocacy/advice/information
- Classification Code
- 203
- Classification Type
- Who
- Classification Description
- People With Disabilities
- Classification Code
- 104
- Classification Type
- What
- Classification Description
- Disability
07 Official extract
Charity Event History
- Charity Name
- KLEEFSTRA SYNDROME UK
- Charity Event Order
- 1
- Event Type
- CIO registration
- Date Of Event
- 2024-04-30T00:00:00
08 Official extract
Charity Governing Document
- Governing Document Description
- CIO - FOUNDATION Registered 30 Apr 2024
- Charitable Objects
- THE OBJECTS OF THE CIO ARE TO RELIEVE THE NEEDS OF PEOPLE WITH KLEEFSTRA SYNDROME AND THEIR FAMILIES AND PEOPLE CONNECTED TO, CARES FOR, SUPPORTS, OR WORKS WITH SOMEONE WITH KLEEFSTRA SYNDROME BY:-• INCREASING AWARENESS OF THE SYMPTOMS OF KLEEFSTRA SYNDROME TO SUPPORT DIAGNOSIS AND PROFESSIONAL AND MEDICAL ASSISTANCE;• THE PROVISION OF INFORMATION, ADVICE AND OTHER ASSISTANCE, TO SUPPORT THOSE AFFECTED WITH KLEEFSTRA SYNDROME;• THE PROMOTION OF RESEARCH INTO THE CAUSES, TREATMENT AND MANAGEMENT OF KLEEFSTRA SYNDROME AND • DISSEMINATING AND PUBLISHING THE USEFUL RESULTS OF ANY SUCH RESEARCH; AND• UNDERTAKING ANY OTHER CHARITABLE ACTIVITIES IN CONNECTION WITH KLEEFSTRA SYNDROME.NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH [SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005] AND [SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008].
09 Official extract
Charity Other Names
- Charity Name Id
- 679275
- Charity Name Type
- Working name
- Charity Name
- KLEEFSTRASYNDROME.ORG
10 Official extract
Charity Policy
- Policy Name
- Internal charity financial controls policy and procedures
- Policy Name
- Trustee conflicts of interest policy and procedures
- Policy Name
- Safeguarding policy and procedures
- Policy Name
- Financial reserves policy and procedures
- Policy Name
- Trustee expenses policy and procedures
- Policy Name
- Social media policy and procedures