BARDET-BIEDL SYNDROME UK (BBS UK)

Registered charity 1181244 · accounts filings on the Charity Commission register · also known as BARDET-BIEDL SYNDROME UK, BBS UK

BBS UK provides support, information and advocacy services. It organises an annual family conference, a family activity weekend and social weekend for adults living with the syndrome. The charity maintains a website and produces twice-yearly newsletters, an annual Conference Report, information leaflets and online resources.

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

Latest income

£396k

Latest spending

£295k

Registered

2018

Accounts read

FY2025

Financial health, per its FY2025 accounts

The accounts state that the charity reported a surplus for the year with total unrestricted funds increasing to £277,071. The trustees consider the charity to have adequate resources to continue its activities for the foreseeable future, with estimated free reserves of £157,933 equivalent to 5.5 months' core expenditure. The charity is not dependent on any single source of funding, having secured significant legacy income and ongoing NHS commissioning.

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

What the accounts disclose

Reserves position: below the charity's own stated reserves policy (held: £158k; policy: six months expenditure)

“This leaves estimated free reserves of £157,933, equivalent to 5.5 months’ core expenditure.” — page 21

Per its FY2025 accounts as filed with the Charity Commission.

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

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

Register events

Received assets from another charity (23/12/2020) — per the register’s event history; asset transfers typically record mergers or reorganisations.

Trustees · trustee networks

Bilaal Ali
Chetankumar Meshram
DIANNE JULIE HAND
Dr Shehla Mohammed
Emma Hughes
Gareth Owens
Liam Wilkie
Natasha Murray
RACHAEL ANNE Zimbler

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

Operates in: Throughout England And Wales

Income and spending

Financial year end	Income	Spending
31/03/2025	£396k	£295k
31/03/2024	£316k	£279k
31/03/2023	£243k	£250k
31/03/2022	£155k	£94k
31/12/2020	£54k	£55k

Common questions

Is BARDET-BIEDL SYNDROME UK (BBS UK) financially healthy?

Per its FY2025 accounts: The accounts state that the charity reported a surplus for the year with total unrestricted funds increasing to £277,071. The trustees consider the charity to have adequate resources to continue its activities for the foreseeable future, with estimated free reserves of £157,933 equivalent to 5.5 months' core expenditure. The charity is not dependent on any single source of funding, having secured significant legacy income and ongoing NHS commissioning. Its FY2025 accounts were independently examined.

Who funds BARDET-BIEDL SYNDROME UK (BBS UK)?

Funders whose own accounts filings name BARDET-BIEDL SYNDROME UK (BBS UK) as a grant recipient include LILLIE JOHNSON CHARITABLE TRUST, THE WILL CHARITABLE TRUST.

Known funders

Grants to this charity found in funders’ own accounts filings.

Funder	Year	Amount	Purpose (as stated by the funder)
LILLIE JOHNSON CHARITABLE TRUST	FY2024	£35k
THE WILL CHARITABLE TRUST	FY2025	£23k	Care of the Blind, Prevention of, or Cure of Blindness
THE WILL CHARITABLE TRUST	FY2024	£8k
LILLIE JOHNSON CHARITABLE TRUST	FY2025	£5k

Government & lottery funding

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

Funder	Date	Amount	Purpose
The National Lottery Community Fund	14/05/2026	£19k	Wellbeing Support Service
The National Lottery Community Fund	22/07/2024	£14k	Wellbeing Support Service
The National Lottery Community Fund	31/08/2023	£10k	BBS UK Weekend Family Conference
The National Lottery Community Fund	14/03/2019	£9k	Development/Administration Officer