The Governance RegisterEdition 2026 · Compiled 30th August 2026

VHL UK/Ireland

Registered charity 1160381 Registered since 2015

Operates: Ireland, Scotland, Northern Ireland, Throughout England And Wales

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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.

6.4y median 6y
average tenure
13y
longest tenure
6.7y
average years in governance

First-time vs portfolio trustees

First-time (13)

0
company-linked trustees

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

The Advancement Of Health Or Saving Of Lives 13

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.

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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.
2021
2022
2023
2024
2025
incomespending£20k latest income

Related organisations iRelated organisationsTwo groups, both deterministic from public records. Related organisations share two or more trustees with this board - a real structural link, such as a subsidiary or sister charity. Connected through a shared trustee share exactly one person - a genuine connection, but not the same group. A board with no shared trustee at all may still appear here when it is active in the same charitable field.

Also active in the same field

Deterministic, from public records.

Contact

Websitehttp://vhl-uk-ireland.org/
Emailuk@vhl-uk-ireland.org
Phone07762525561
Address47 Tiln Lane, RETFORD, DN22 6SN

Finances

£20,076 latest income

YearIncomeSpending
2021£34,824£60,619
2022£18,131£801
2023£8,110£21,514
2024£38,000£1,900
2025£20,076£38,915

What it does

What

The Advancement Of Health Or Saving Of Lives

Who

People With Disabilities

How

Provides Advocacy/advice/informationSponsors Or Undertakes Research

Charitable objects

TO RELIEVE THE CHARITABLE NEEDS OF PERSONS WHO HAVE VON HIPPEL-LINDAU SYNDROME (VHL) AND SIMILAR GENETIC CONDITIONS SUCH AS HEREDITARY LEIOMYOMATOSIS AND RENAL CELL CANCER (HLRCC) AND BIRT-HOGG-DUBE SYNDROME (BHD) AND THEIR FAMILIES AND CARERS IN THE UK AND IRELAND FOR THE PUBLIC BENEFIT IN PARTICULAR BUT NOT EXCLUSIVELY BY1)PROVIDING SUPPORT AND ADVICE REGARDING THEIR GENETIC CONDITIONS,2)PROVIDING FUNDS FOR RESEARCH INTO THE GENETIC CONDITIONS AND FOR EQUIPMENT TO ASSIST WITH SUCH RESEARCH,3)TO ADVANCE THE EDUCATION OF THE PUBLIC IN ALL MATTERS CONCERNING THE GENETIC CONDITIONS.

Governing document: CONSTITUTION ADOPTED 05/04/2013AS AMENDED ON 06/02/2015AS AMENDED ON 08 APR 2016

Trustees (13)

13trustees
0aged 70+

Connected charities (0)

No charities share a trustee (from current data).

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