BARTH SYNDROME UK

Registered charity 1181830 · accounts filings on the Charity Commission register

Working throughout the UK, we assist families with Barth syndrome with support, information and access to expert care.We fund research into treatments and a cure.

Objects

THE RELIEF OF INDIVIDUALS WITH, AND CARRIERS OF, BARTH SYNDROME AND THEIR FAMILIES, WITHIN THE UNITED KINGDOM AND ELSEWHERE IN THE WORLD IN PARTICULAR BUT NOT EXCLUSIVELY BY:A) PROVIDING ACCESS TO INFORMATION, ADVICE AND SUPPORT IN RELATION TO THE CONDITION TO THE PUBLIC AND, IN PARTICULAR, DIAGNOSED INDIVIDUALS AND THEIR EXTENDED FAMILIES AND THOSE IN THE EDUCATIONAL, SCIENTIFIC, MEDICAL AND ALLIED HEALTH CARE PROFESSIONS.B) THE PROMOTION AND FUNDING OF RESEARCH INTO THE CAUSES AND EFFECTS OF THE CONDITION AND THE DISSEMINATION OF THE USEFUL RESULTS OF THE SAME FOR THE BENEFIT OF THE PUBLIC.

Area of benefit: WITHIN THE UNITED KINGDOM AND ELSEWHERE IN THE WORLD

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 · The Advancement Of Health Or Saving Of Lives · website · Get email alerts

Financial health, per its FY2025 accounts

The accounts state that the charity ended the year with a surplus of £21,494, increasing its bank balances to £73,843. The trustees maintain a reserves policy targeting 12 to 24 months of core funding requirements. The independent examiner confirmed that no material matters were identified during the examination of the accounts.

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 4 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 handling
• Complaints policy and procedures
• Conflicting interests
• Financial reserves policy and procedures
• Internal charity financial controls policy and procedures
• Internal risk management policy and procedures
• Paying staff
• Risk management
• Safeguarding policy and procedures
• Safeguarding vulnerable beneficiaries
• Serious incident reporting policy and procedures
• Social media policy and procedures
• Trustee conflicts of interest policy and procedures
• Trustee expenses policy and procedures
• Volunteer management

Public fundraising profile: JustGiving — Barth Syndrome UK (matched by registered charity number).

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

Register events

• Received assets from another charity (11/01/2020) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Trustees · trustee networks

• RALPH STEVEN EASTERBROOKchair
• Kelsey Leigh Doran
• Paul Laurence Ford
• Susan Williams
• Suzanne Michelle Green

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

Operates in: Ireland · Scotland · Throughout England And Wales · United States

Income and spending

Common questions