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The Dystonia Society

Promoting the welfare of people who are afflicted by Dystonia, a neurological movement disorder, via the following activites:Linking people affected by dystonia, including a network of local groupsRaising awareness of dystonia and the SocietyProviding information and supportImproving access to treatment and other services and promoting best practiceProgressing research

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Activities & Mission

Promoting the welfare of people who are afflicted by Dystonia, a neurological movement disorder, via the following activites:Linking people affected by dystonia, including a network of local groupsRaising awareness of dystonia and the SocietyProviding information and supportImproving access to treatment and other services and promoting best practiceProgressing research

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
£422,337
Latest Expenditure
£402,567

Financial Efficiency

Program Ratio 35.5%
% of income going directly to charitable activities
Overall Efficiency 76.4%
% of expenditure going to programs (vs overhead)
Administrative Ratio 26.5%
Overhead (fundraising + governance) as % of total expenditure

Latest Financial Breakdown

Income Sources

Donations & Legacies £417,059
Charitable Activities £264,418
Other Trading £1,958
Investments £8,918
Other Income £0

Expenditure Categories

Charitable Expenditure £245,535
Raising Funds £75,741
Governance £9,411
Grants to Institutions £0
Other Expenditure £0

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.

Financial YearIncomeExpenditureCharitable SpendingNet AssetsReservesStaff
2025
£422,337
£402,5670 / 25
2024
£692,353
£321,276£245,535£702,295£410,0005 / 20
2023
£277,412
£285,7750 / 0
2022
£293,052
£262,2780 / 30
2021
£421,975
£310,1000 / 30

Staff column shows: Employees / Volunteers

Frequently asked questions about The Dystonia Society

What does The Dystonia Society do?

Promoting the welfare of people who are afflicted by Dystonia, a neurological movement disorder, via the following activites:Linking people affected by dystonia, including a network of local groupsRaising awareness of dystonia and the SocietyProviding information and supportImproving access to treatment and other services and promoting best practiceProgressing research

How much income did The Dystonia Society report in 2025?

The Dystonia Society reported total income of £422k and reported expenditure of £403k for the financial year ending 2025, based on the most recent annual return filed with the Charity Commission.

When was The Dystonia Society registered as a charity?

The Dystonia Society was registered with the Charity Commission for England and Wales on 2 June 1997 as charity number 1062595. It has been registered for 29 years.

Who runs The Dystonia Society?

The Dystonia Society is governed by a board of 9 trustees. Trustees are legally responsible for the charity's governance and are listed in full on its profile.

Where does The Dystonia Society operate?

The Dystonia Society operates across 3 areas: Northern Ireland, Scotland and England And Wales.

Is The Dystonia Society a registered charity?

Yes — The Dystonia Society is a registered charity in England and Wales, charity number 1062595.

Details

Address
3rd. FLOOR
89 ALBERT EMBANKMENT
LONDON
SE1 7TP
Registration Date
2 June 1997
Status
Registered

Registry Information

Organisation Number
3939453
Charity Number
1062595

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Trustees

Dr Amit Batla
Emily Birden
Fermanda Perez
Ntonella Macerolla
Penny Ritchie-Calder
Qamar Khan MBE
Robert Harold William Semple
Sophie Eleanor Norman
Timothy John Gannicliffe
Also governs 1 other charity

Data & trust

Register data refreshed
14 May 2026
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