The Governance RegisterEdition 2026 · Compiled 12th July 2026

Ectodermal Dysplasia Society

Registered charity 1089135 Registered since 2001

Operates: 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.

13
trustees on the board
6.5y median 6y
average tenure
14y
longest tenure
7
trustees past 6 years
5.6y
average years in governance
13 vs 0 portfolio
first-time trustees
0
company-linked trustees

Sector coverage

Disability 13Education/training 13The 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
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Related organisations

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

Contact

Websitewww.edsociety.co.uk
Emaildiana@edsociety.co.uk
Phone01242261332
AddressUNIT 1 MAIDA VALE BUSINESS CENTRE, LECKHAMPTON, CHELTENHAM, GLOS, GL53 7ER

Finances

£107,407 latest income

YearIncomeSpending
2021£34,163£43,857
2022£71,573£50,984
2023£62,771£71,229
2024£77,208£72,613
2025£107,407£115,098

What it does

What

Education/trainingThe Advancement Of Health Or Saving Of LivesDisability

Who

Children/young PeopleElderly/old PeoplePeople With DisabilitiesThe General Public/mankind

How

Provides ServicesProvides Advocacy/advice/informationSponsors Or Undertakes Research

Charitable objects

THE RELIEF OF SICKNESS AND THE PROTECTION AND PRESERVATION OF THE HEALTH OF PERSONS AFFECTED BY ECTODERMAL DYSPLASIA AND ANY RELATED CONDITION AND THEIR FAMILIES AND CARERS IN PARTICULAR BY BUT NOT RESTRICTED TOA) THE ADVANCEMENT OF THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC INTO ECTODERMAL DYSPLASIA AND ITS IMPLICATIONS FOR THE FAMILY.B) THE PROMOTION OF RESEARCH INTO THE CAUSES, EFFECTS, TREATMENT AND MANAGEMENT OF ECTODERMAL DYSPLASIA AND TO DISSEMINATE THE USEFUL RESULTS THEREOF.

Governing document: CONSTITUTION ADOPTED 14 JULY 2001 AS AMENDED ON 8 MAY 2004AS AMENDED ON 07 MAY 2016 as amended on 15 Oct 2022

Trustees (13)

13trustees
0aged 70+

Connected charities (0)

No charities share a trustee (from current data).

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