BATTEN DISEASE FAMILY ASSOCIATION

Registered charity 1084908 · accounts filings on the Charity Commission register · also known as BDFA

A supportive, informative, national networking organisation for the families, carers and professionals giving care to children and adults with Batten Disease and for promoting awareness of, and research into, the disease

Objects

A) PRESERVE AND PROTECT THE HEALTH AND PROMOTE THE WELFARE OF PERSONS AFFECTED BY ALL TYPES OF NEURONAL CERIOD LIPOFUSCINOSIS (NCL) COMMONLY KNOWN AS BATTEN DISEASE.B) TO ADVANCE THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC ON THE SUBJECT OF BATTEN DISEASE AND ITS IMPLICATIONS FOR THE FAMILY.C) TO PROMOTE RESEARCH INTO THE MANAGEMENT OF BATTEN DISEASE AND TO PUBLISH THE USEFUL RESULTS THEREOF AND TO SUPPORT ORGANISATIONS PROMOTING RESEARCH INTO BATTEN DISEASE.

Area of benefit: NOT DEFINED. IN PRACTICE, THE UNITED KINGDOM.

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

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

We have not yet analysed this charity’s accounts. Register data shown below.

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
• Campaigns and political activity policy and procedures
• Complaints handling
• Complaints policy and procedures
• Conflicting interests
• Engaging external speakers at charity events policy and procedures
• Financial reserves policy and procedures
• Internal charity financial controls policy and procedures
• Investment
• 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

From the charity’s annual return (Part A, self-declared)

Answers and figures the charity gave in Part A of its annual return to the Charity Commission. They are self-declared: not verified by the Commission or by this site. Only positive answers and figures are listed; items not listed are simply not shown.

Source: this charity’s annual returns on the Charity Commission register.

Structured financials (annual return, FY ending 31/08/2023)

Reported reserves equal ~2.8 months of spending — below the median for charities its size (median 7.2 months; benchmarks).

Per its annual return, largest income source: Donations and legacies (83% of income) — components as reported reconcile to the return’s total income; not from the accounts narrative.

Per its annual return, cost of raising funds: 17.3% of total income — in the top quarter for charities its size (median 3.2%) (benchmarks).

Register events

• Transferred assets to another charity (11/12/2025) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Operates in: Northern Ireland · Scotland · Throughout England And Wales

Income and spending