SHWACHMAN DIAMOND SYNDROME UK

Registered charity 1164269 · accounts filings on the Charity Commission register · also known as SDSUK

To support patients and families in the UK affected by Shwachman-Diamond Syndrome (SDS) by: promoting access to health and educational services for affected patients throughout the UK, supporting research into the pathophysiology of SDS and its current and potential treatment, and providing educational resources and activities about SDS for the benefit of families, professionals and the public.

Objects

TO PROVIDE RELIEF TO PATIENTS AND FAMILIES IN THE UK (INCLUDING SCOTLAND AND NORTHERN IRELAND) WHO ARE AFFECTED BY SHWACHMAN-DIAMOND SYNDROME (SDS) IN PARTICULAR BUT NOT EXCLUSIVELY BY:? PROMOTING ACCESS TO HEALTH AND EDUCATIONAL SERVICES FOR AFFECTED PATIENTS THROUGHOUT THE UK,? SUPPORTING RESEARCH INTO THE PATHOPHYSIOLOGY OF SDS AND ITS CURRENT AND POTENTIAL TREATMENT AND THE PUBLIC DISSEMINATION OF THE USEFUL RESULTS THEREOF, AND? PROVIDING AND ENCOURAGING OTHERS TO PROVIDE EDUCATIONAL RESOURCES AND ACTIVITIES ABOUT SDS FOR THE BENEFIT OF FAMILIES, PROFESSIONALS AND THE PUBLIC, BOTH NATIONALLY AND INTERNATIONALLY.

The charity’s charitable objects and area of benefit, quoted from its governing document as held on the Charity Commission register.

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

Financial health, per its FY2025 accounts

The accounts state that the charity generated a net surplus of £30,981 for the year ended 31 October 2025, with total income of £56,700 against expenditure of £25,719. Per the trustees' report, unrestricted reserves stood at £126,944, while the charity retained £9,500 as a buffer against funding fluctuations. The trustees maintain modest reserves to ensure continuity of operations and cover essential costs for at least three months of activity.

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

What the accounts disclose

Accounts independently examined (not a full audit). Discloses 5 of 6 completeness components.

Policies the charity declares

In its annual return the charity told the Commission that it has the policies listed below. This is self-declared: it is not verified by the Commission or by this site, and it is not evidence of how a policy works in practice.

• Bullying and harassment policy and procedures
• Complaints policy and procedures
• Financial reserves policy and procedures
• Internal charity financial controls policy and procedures
• Internal risk management policy and procedures
• Investing charity funds policy and procedures
• Safeguarding policy and procedures
• Serious incident reporting policy and procedures
• Social media policy and procedures
• Trustee conflicts of interest policy and procedures
• Trustee expenses policy and procedures

Public fundraising profile: JustGiving — SDSUK (matched by registered charity number).

Funders the charity credits

Named as funders/supporters on the charity’s own website (the charity’s claim, distinct from accounts-verified grants).

• The National Lottery Community Fund — “This project is funded by @tnlcommunityfund with thanks to players of The National Lottery.” (source page)

Public profiles (found on the charity’s own website): instagram

Trustees · trustee networks

• Andrew Oldingchair
• Kapil Gotecha
• Rebecca Cuffe

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

Operates in: Throughout England And Wales

Income and spending

Common questions