Finance Score: 2

Governance Score: 3

Support Score: 3

Strong growth: +2
No PartB

Dynamic board: +3

Grant maker support: +3

Overall GiG Score: 8

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.

Analysis by Giving is Great

Positives:

The charity has received backing from a grant maker
There has been strong growth in spending since inception
The Board appears to be dynamic in terms of composition

Financial issues to consider:

There has been a change of accounting period recently, so trends may be hard to determine

Established: 5 years

www.bbsuk.org.uk

admin@bbsuk.org.uk

07591206680

Charity Commission for England and Wales

Tweets

Financial Data ?

Income & Spending ?

N.B. data has been adjusted to reflect year end change

Sources of Income ?

Y/E		Income	Spending	Surplus/ Deficit	Volun- teers

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Highest pay bracket: less than £60,000

Listed activities

Disability
General Charitable Purposes
The Advancement Of Health Or Saving Of Lives

How it operates

Provides advocacy/advice/information
Provides services
Sponsors or undertakes research

Where it operates

Throughout England And Wales,

Who it helps

Children/Young People
People With Disabilities

Who works here?

Unknown number of employees
12 volunteers

Who's supporting them? ?

Donations from Grant Makers ?

We have details on the following significant donations. Multi-year donations are allocated to the years for which they are earmarked.

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - BBS UK Weekend Family Conference
£9,500	31/08/2023	The funding will be used to contribute to the delivery cost of the Bardet-Biedl Syndrome (BBS) UK Weekend Family Conference for people living with the rare genetic condition. The project aims to give ....more The funding will be used to contribute to the delivery cost of the Bardet-Biedl Syndrome (BBS) UK Weekend Family Conference for people living with the rare genetic condition. The project aims to give people living with the ocondition an opportunity to meet others living through similar experiences reducing isolation and improving wellbeing.
National Lottery Community Fund - Development/Administration Officer
£8,985	14/03/2019 12	The project will use funding to employ a co-ordinator to organise conferences, social activities & communication links throughout the community of people affected by Bardet-Biedi Syndrome. This ....more The project will use funding to employ a co-ordinator to organise conferences, social activities & communication links throughout the community of people affected by Bardet-Biedi Syndrome. This will allow access to the charity's activities to everyone who needs guidance and support.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (9)

Current Trustees appointed

CHETANKUMAR MESHRAM Appointed: 2023

DR SHEHLA MOHAMMED Appointed: 2021

TAZEEM ABBAS Appointed: 2023

DIANNE JULIE HAND Appointed: 2018

GARETH OWENS Appointed: 2023

LAURA PAULINE DOWSWELL Appointed: 2018

LIAM WILKIE Appointed: 2021

RACHAEL ANNE FOLEY Appointed: 2018

STEFAN ALLEN CROCKER Appointed: 2018

Legal constitution

Charity registered in England & Wales on 18/12/2018, number: 1181244

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

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

Filing Record

4 returns made; all on time

Recent reorganisation events:

Asset transfer in from BARDET - BIEDL SYNDROME UK on 23/12/2020

Main office

43 BALTON WAY
HARWICH
CO12 4UP

Objectives

THE OBJECTS OF THE CIO ARE:(A) TO PRESERVE AND PROTECT THE HEALTH AND PROMOTE THE WELFARE OF PERSONS DIAGNOSED WITH BARDET-BIEDL SYNDROME AND THEIR FAMILIES;(B) TO ADVANCE THE EDUCATION OF THE MEDICAL AND EDUCATIONAL PROFESSIONS AND THE GENERAL PUBLIC ON THE SUBJECT OF BARDET-BIEDL SYNDROME AND ITS IMPLICATIONS FOR THE FAMILY AND TO PROMOTE RESEARCH FOR THE PUBLIC BENEFIT IN ALL ASPECTS OF THAT SUBJECT AND TO PUBLISH THE USEFUL RESULTS.

Data Sources