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International Niemann-Pick Disease Registry

The INPDR aims to increase understanding of Niemann-Pick Disease through the collection of patient data on a global scale. It will encourage efficient and timely diagnosis, improve understanding of disease progression and influence patient care, whilst supporting global research efforts, facilitating recruitment of clinical studies and supporting development/access to new and emerging therapies.

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Activities & Mission

The INPDR aims to increase understanding of Niemann-Pick Disease through the collection of patient data on a global scale. It will encourage efficient and timely diagnosis, improve understanding of disease progression and influence patient care, whilst supporting global research efforts, facilitating recruitment of clinical studies and supporting development/access to new and emerging therapies.

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
£447,821
Latest Expenditure
£368,458

Financial Efficiency

Overall Efficiency 82.3%
% of expenditure going to programs (vs overhead)
Expenditure Ratio 82.3%
Expenditure as % of income

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
£447,821
£368,4580 / 5
2024
£131,498
£307,6860 / 6
2023
£173,361
£415,9070 / 2
2022
£456,982
£279,1400 / 2
2021
£390,375
£265,2550 / 3

Staff column shows: Employees / Volunteers

Frequently asked questions about International Niemann-Pick Disease Registry

What does International Niemann-Pick Disease Registry do?

The INPDR aims to increase understanding of Niemann-Pick Disease through the collection of patient data on a global scale. It will encourage efficient and timely diagnosis, improve understanding of disease progression and influence patient care, whilst supporting global research efforts, facilitating recruitment of clinical studies and supporting development/access to new and emerging therapies.

How much income did International Niemann-Pick Disease Registry report in 2025?

International Niemann-Pick Disease Registry reported total income of £448k and reported expenditure of £368k for the financial year ending 2025, based on the most recent annual return filed with the Charity Commission.

When was International Niemann-Pick Disease Registry registered as a charity?

International Niemann-Pick Disease Registry was registered with the Charity Commission for England and Wales on 23 October 2017 as charity number 1175311. It has been registered for 9 years.

Who runs International Niemann-Pick Disease Registry?

International Niemann-Pick Disease Registry is governed by a board of 3 trustees. The chair of trustees is JAMES EDWARD GREEN. Trustees are legally responsible for the charity's governance and are listed in full on its profile.

Where does International Niemann-Pick Disease Registry operate?

International Niemann-Pick Disease Registry operates in England And Wales, as recorded in its Charity Commission filing.

Is International Niemann-Pick Disease Registry a registered charity?

Yes — International Niemann-Pick Disease Registry is a registered charity in England and Wales, charity number 1175311.

Details

Address
SUITE 2E
NORTH SANDS BUSINESS CENTRE
LIBERTY WAY
SUNDERLAND
SR6 0QA
Registration Date
23 October 2017
Status
Registered

Registry Information

Organisation Number
5098182
Charity Number
1175311

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Trustees

JAMES EDWARD GREEN Chair
Also governs 1 other charity
TARAKEGN HIWOT
TONI MATHIESON

Sectors & Classifications

Data & trust

Register data refreshed
14 May 2026
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