Cystinosis Foundation of the UK

Registered charity 1074885 Registered since 1999

Operates: 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.

trustees on the board

4.6y median 6y

average tenure

12y

longest tenure

trustees past 6 years

4.3y

average years in governance

8 vs 0 portfolio

first-time trustees

company-linked trustees

Sector coverage

The Advancement Of Health Or Saving Of Lives 8

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

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Related organisations

North Gwent Cardiac Rehabilitation and Aftercare Similar size; both Health
The Turning Point Counselling Service Similar size; both Health
The Confederation of Healing Organisations Similar size; both Health
Life for African Mothers Similar size; both Health
North of England Oncology Association Similar size; both Health
The British Society for Nanomedicine Similar size; both Health

Boards that overlap with this one through shared trustees, or govern in the same field. Deterministic, from public records.

Contact

Website	www.cystinosis.org.uk
Email	advice@cystinosis.org.uk
Phone	07976272064
Address	Cystinosis Foundation UK, Unit 81304, PO Box 15113, Birmingham, B2 2NJ

Finances

£34,431 latest income

Year	Income	Spending
2021	£20,278	£10,844
2022	£21,443	£5,664
2023	£45,281	£115,891
2024	£21,084	£16,033
2025	£34,431	£19,238

What it does

What

The Advancement Of Health Or Saving Of Lives

Who

Children/young PeoplePeople With DisabilitiesOther Defined Groups

How

Provides Advocacy/advice/informationSponsors Or Undertakes ResearchOther Charitable Activities

Charitable objects

TO RELIEVE PERSONS SUFFERING FROM CYSTINOSIS AND MEMBERS OF THEIR IMMEDIATE FAMILIES WHO ARE NECESSITOUS CIRCUMSTANCES IN PARTICULAR BY THE PROVISION OF INFORMATION AND FINANCIAL SUPPORT AND BY RAISING PUBLIC AWARENESS OF THE DISORDER.

Governing document: DECLARATION OF TRUST DATED 2 FEBRUARY 1998

Trustees (8)

8trustees

0aged 70+

Connected charities (0)

No charities share a trustee (from current data).

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