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INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY

Registered charity 1175311 · accounts filings on the Charity Commission register

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.

Causes: Education/training · The Advancement Of Health Or Saving Of Lives · website · Get email alerts

Latest income
£448k
Latest spending
£368k
Registered
2017
Accounts read
FY2025

Financial health, per its FY2025 accounts

The accounts state that unrestricted income increased significantly to £371,210 from £39,143 in the prior year, resulting in a net income of £79,363. The trustees report that budgeted income and expenditure are sufficient with current reserves to continue as a going concern, although they note that a higher level of reserve will be required as registry activities grow.

Automated summary of the FY2025 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Highest-paid employee band: £60,465 — in the top quarter for charities its size (median £60k)
“The Chief Executive Officer is key management and his total employee benefits (including NI and Pension) were £60,465.” — page 19
Per its FY2025 accounts as filed with the Charity Commission.
Employees paid over £60,000: 1
“The Chief Executive Officer is key management and his total employee benefits (including NI and Pension) were £60,465. (2024 £65,455)” — page 19
Per its FY2025 accounts as filed with the Charity Commission.
Reserves position: below the charity's own stated reserves policy (held: £91k; policy: six months running costs)
“There were free reserves of £11,387 on 31 March 2025 (2024 -£7,429) The board aim is to hold six months running costs in reserve which would be £136,515.” — page 9
Per its FY2025 accounts as filed with the Charity Commission.
Trading subsidiary: INPDR Gateway Ltd
“The INPDR (Registry) fully owns a company, INPDR Gateway Ltd (Gateway), which carries out the commercial operations of the Registry.” — page 22
Per its FY2025 accounts as filed with the Charity Commission.

Accounts independently examined (not a full audit). Discloses 6 of 6 completeness components.

Corporate structure

INPDR GATEWAY LTD — per its own Companies House accounts

    Company officers (Companies House)

    Current officers of the charity’s own company per the Companies House register, cross-checked against the Charity Commission trustee list by name. A director not on the trustee list is usually a timing or naming difference between the two registers — check both records before drawing conclusions.

    Official officers record.

    Public profiles (found on the charity’s own website): facebook · linkedin

    Trustees · trustee networks

    Trustee list from the Charity Commission register (current, not historical).

    Operates in: Throughout England And Wales

    Income and spending

    Financial year endIncomeSpending
    31/03/2025£448k£368k
    31/03/2024£131k£308k
    31/03/2023£173k£416k
    31/03/2022£457k£279k
    31/03/2021£390k£265k

    Common questions

    Is INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY financially healthy?

    Per its FY2025 accounts: The accounts state that unrestricted income increased significantly to £371,210 from £39,143 in the prior year, resulting in a net income of £79,363. The trustees report that budgeted income and expenditure are sufficient with current reserves to continue as a going concern, although they note that a higher level of reserve will be required as registry activities grow. Its FY2025 accounts were independently examined.

    What does the highest-paid employee of INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY earn?

    Per its FY2025 accounts, the highest-paid employee was in the £60,465 band, and 1 employees earned over £60,000.

    Government & lottery funding

    Grants to this charity published as open data by government and lottery funders (360Giving).

    FunderDateAmountPurpose
    The National Lottery Community Fund26/01/2024£20kTelling the Story of Niemann-Pick Diseases in the UK