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Registered charity (CIO) · West Sussex

Pitt Hopkins UK

Pitt Hopkins UK is a registered charity (number 1167153) based in West Sussex, governed by 6 trustees and chaired by SUE Routledge since 2016. Latest income £23k (2025). Source: Charity Commission register, updated 4th October 2026.

Also known as Pitt Hopkins Syndrome UK (Charity Commission)

  • 6 trustees
  • Income £23k (2025)
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Official record Charity Commission · updated 4th October 2026 · Sources

Network

The large node is Pitt Hopkins UK. Red nodes are organisations, white nodes are people. Sign in free to explore further.

Who leads it

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

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Similar charities are matched by type of organisation or purpose and listed by latest income; shared trustees are formal board links. Neither is proof the organisations work together.

About

What it does
Disability
Where
Throughout England And Wales, Ireland, Scotland, Northern Ireland
Website
www.pitthopkins.org.uk (opens in a new tab)
Registered
2016

Income and spending

  • YearIncomeSpending
  • 2025£23k£4k
  • 2024£34k£6k
  • 2023£25k£2k
Earlier years
  • 2022£36k£8k
  • 2021£34k£11k

Income trend, 2021 to 2025.

Charitable objects

TO RELIEVE THE NEEDS OF CHILDREN AND YOUNG PEOPLE DIAGNOSED WITH PITT HOPKINS SYNDROME,THEIR FAMILIES AND CARERS BY:1.INCREASING THE PROFILE OF PITT-HOPKINS SYNDROME FOR PUBLIC BENEFIT BY RAISING AWARENESS OF PITT-HOPKINS SYNDROME. 2.SUPPORTING FAMILIES HAVING A DIAGNOSIS OF PITT-HOPKINS SYNDROME BY PROVIDING INFORMATION AND FUNDING TO FACILITATE OPPORTUNITIES AND MEANS TO COMMUNICATE WITH EACH OTHER AND TO EXCHANGE EXPERIENCES AND ADVICE. 3.PROMOTING UNDERSTANDING OF PITT-HOPKINS SYNDROME BY PROVIDING INFORMATION TO MEDICAL AND SOCIAL PROFESSIONALS. 4.SUPPORTING RESEARCH INTO PITT-HOPKINS SYNDROME, IN PARTICULAR NATURAL HISTORY STUDIES AND BREATHING ANOMALIES AND THE DISSEMINATION OF THE USEFUL RESULTS OF THAT RESEARCH.

Grants received

1 grant · £4,954 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

  • Department for Digital, Culture, Media & Sport · £4,954

Most recent

  • Department for Digital, Culture, Media & Sport £4,9542020-07-03
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.

6 trustees on the board

6.8y median 7.5y
average tenure
10y
longest tenure

Trustees past 6 years

7.2y
average years in governance

First-time vs portfolio trustees

First-time (6)

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 6

Gaps to watch

  • No commercial or business experience on the board
  • Several long-serving trustees could step down together
  • 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 5 years.
2020
2021
2022
2023
2024
incomespending£34k latest income · income exceeded spending in 2023 and 2024

Sources

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

Record details
Registered charity number
1167153
Status
Registered
Governing document
CIO - Foundation Registered 17 May 2016
Contact on the register
02032392123 · sue@pitthopkins.org.uk
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.

Contains public sector information licensed under the Open Government Licence v3.0. Report an issue · How we handle data