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Governance Register

Registered charity (CIO) · Ashbourne

Kleefstra Syndrome UK

  • 7 trustees
  • Income £15k (2025)

Official record Charity Commission · updated 4th October 2026 · Sources

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Who leads it

Current trustees as listed by the Charity Commission, which does not publish previous trustees.

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About

What it does
Disability
Where
Throughout England And Wales
Website
www.kleefstrasyndrome.org (opens in a new tab)
Registered
2024

Income and spending

  • YearIncomeSpending
  • 2025£15k£2k
  • 2024£4k£13k

Income trend, 2024 to 2025.

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].

Grants received

1 grant · £12,346 total

360Giving data, published by funders. Coverage only includes funders who publish their grants to 360Giving, so these figures are a floor, not a complete picture.

Top funders

  • The National Lottery Community Fund · £12,346

Most recent

  • The National Lottery Community Fund £12,3462026-01-19
Board analysis

Board DNA

How this board is put together, from Charity Commission trustee records and Companies House - deterministic, no AI.iBoard compositionCounted from the dated Charity Commission trustee register: the current board only, past trustees excluded.

7 trustees on the board

2.7y median 3y
average tenure
3y
longest tenure
0
trustees past 6 years
3y
average years in governance

First-time vs portfolio trustees

First-time (7)

0
company-linked trustees

Sector coverage iSector coverageThe charitable fields this board's trustees govern in elsewhere, by Charity Commission classification. Excludes this charity.

Disability 7

Gaps to watch

  • No commercial or business experience on the board
  • Narrow spread of causes across the board

Succession forecast iSuccession forecastThe number of board seats likely to open in the next twelve months - summed across the board from each dated trustee’s tenure - and the profile worth recruiting next. From the filed record, deterministic.

🔒 Succession forecast is a Pro feature - the board seats likely to open in the next year and the ideal next trustee. Explore Pro →

Health of the organisation facts side by side - the conclusion is yours

Income v spending, filed accountsiIncome v spendingTotal gross income and expenditure from filed annual returns, Charity Commission, last 2 years.
2024
2025
incomespending£15k latest income

Sources

Official record from the Charity Commission register for England and Wales. Governance Register calculates the connections.

Record details
Registered charity number
1208059
Status
Registered
Governing document
CIO - FOUNDATION Registered 30 Apr 2024
Contact on the register
01335346772 · chair@kleefstrasyndrome.org
Edition
Register edition compiled 4th October 2026
Labels
Official record from the register · Calculated derived by Governance Register. Anything added by an organisation or person is labelled as provided by them.

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