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The Ehlers-Danlos Society

Working to provide learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for EDS & HDS population. A community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by EDS, HSD and related conditions.

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Activities & Mission

Working to provide learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for EDS & HDS population. A community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by EDS, HSD and related conditions.

Areas of Operation

Where this charity is registered to operate, as self-declared to the Charity Commission. These are regulatory classifications, not a list of active programmes, and don't necessarily indicate fundraising activity in each location.

Financial Information

Latest Income
£1,552,526
Latest Expenditure
£1,409,241

Financial Efficiency

Program Ratio 90.1%
% of income going directly to charitable activities
Overall Efficiency 99.2%
% of expenditure going to programs (vs overhead)
Administrative Ratio 0.8%
Overhead (fundraising + governance) as % of total expenditure

Latest Financial Breakdown

Income Sources

Donations & Legacies £1,552,526
Charitable Activities £0
Other Trading £0
Investments £0
Other Income £0

Expenditure Categories

Charitable Expenditure £1,398,223
Raising Funds £0
Governance £11,018
Grants to Institutions £0
Other Expenditure £11,018

Financial Trend

Annual Returns

As filed with the Charity Commission for England and Wales. Most recent filing covers the financial year ending 2025.

One or more years show a significant change in income (over ±100%) compared with the prior year. This usually reflects a merger, transfer of activities, restated accounts, or a one-off legacy — not necessarily a real change in operating scale. See the methodology for context.

The Commission record shows this related event on the register:

  • Asset transfer in in 2019 — a related charity (organisation 3010118)
Financial YearIncomeExpenditureCharitable SpendingNet AssetsReservesStaff
2025
£1,552,526
£1,409,241£1,398,223£200,179£020 / 0
2024
£1,166,070
£1,140,663£1,130,091£56,894£014 / 0
2023
£1,217,571
£1,217,063£1,208,663£31,487£012 / 0
2022
£598,909
£578,647£533,539£30,979£09 / 0
2021
£429,673
£499,5470 / 0

Staff column shows: Employees / Volunteers

Frequently asked questions about The Ehlers-Danlos Society

What does The Ehlers-Danlos Society do?

Working to provide learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for EDS & HDS population. A community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by EDS, HSD and related conditions.

How much income did The Ehlers-Danlos Society report in 2025?

The Ehlers-Danlos Society reported total income of £1.55m and reported expenditure of £1.41m for the financial year ending 2025, based on the most recent annual return filed with the Charity Commission.

When was The Ehlers-Danlos Society registered as a charity?

The Ehlers-Danlos Society was registered with the Charity Commission for England and Wales on 4 December 2018 as charity number 1180984. It has been registered for 8 years.

Who runs The Ehlers-Danlos Society?

The Ehlers-Danlos Society is governed by a board of 11 trustees. The chair of trustees is Susan Hawkins. Trustees are legally responsible for the charity's governance and are listed in full on its profile.

Where does The Ehlers-Danlos Society operate?

The Ehlers-Danlos Society operates in England And Wales, as recorded in its Charity Commission filing.

Is The Ehlers-Danlos Society a registered charity?

Yes — The Ehlers-Danlos Society is a registered charity in England and Wales, charity number 1180984.

Details

Address
Office 7
35-37 Ludgate Hill
London
EC4M 7JN
Registration Date
4 December 2018
Status
Registered

Registry Information

Organisation Number
5120937
Charity Number
1180984

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Trustees

Susan Hawkins Chair
Aisling Green
Anoushe Husain
Colin O'Donnell
Dr Akilah Cadet
Dr Melanie Jane MacLeod
Dr Woodrow Gandy
Frances Anne Fitzgerald
John B Zonarich
Robert Rubin
Sue Haskel

Data & trust

Register data refreshed
30 July 2026
Report a data issue