Finance Score: -2

Governance Score: -1

Support Score: 6

Multiple Deficits: -2
No PartB

Good trustee age range: +3
Static board: -3
Mainly female board: -1

Large volunteers +3
Grant maker support: +3

Overall GiG Score: 3

RARE CHROMOSOME DISORDER SUPPORT GROUP

Unique - The Rare Chromosome Disorder Support Group, is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them.

Analysis by Giving is Great

Positives:

This charity has been successful in attracting volunteers relative to its size
The charity has received modest backing from several prominent grant makers recently
Spending has increased over the last 3 years relative to the previous period
The Board appears to be well diversified in terms of age

Regulatory & Governance issues to consider:

The Board is predominantly female
The Board composition appears to be rather static

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data
On several occasions in recent years income has been less than spending

Established: 19 years

www.rarechromo.org

info@rarechromo.org

01883330766

Charity Commission for England and Wales

Tweets

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E	Income £k	Spending £k	Surplus/ Deficit	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff	Volun- teers
31/03/23	£289	£383	£-93	n/a	n/a	n/a	n/a	n/a	200
31/03/22	£305	£344	£-39	n/a	n/a	n/a	n/a	n/a	200
31/03/21	£357	£300	£58	n/a	n/a	n/a	n/a	n/a	200
31/03/20	£324	£331	£-8	n/a	n/a	n/a	n/a	n/a	200
31/03/19	£392	£282	£110	n/a	n/a	n/a	n/a	n/a	200
31/03/18	£289	£316	£-27	£0	£0	£0	n/a	0	0
31/03/17	£325	£357	£-32	£0	£0	£0	n/a	0	0
31/03/16	£374	£327	£47	£0	£0	£0	n/a	0	0
31/03/15	£316	£307	£9	£0	£0	£0	n/a	0	0
31/03/14	£272	£266	£7	£0	£0	£0	n/a	0	0
31/03/13	£309	£275	£34	£0	£0	£0	n/a	0	0
31/03/12	£304	£214	£90	£0	£0	£0	n/a	0	0
31/03/11	£266	£249	£16	£0	£0	£0	n/a	0	0
31/03/10	£269	£256	£13	£0	£0	£0	n/a	0	0
31/03/09	£186	£276	£-90	£0	£0	£0	n/a	0	0
31/03/08	£197	£197	£0	£0	£0	£0	n/a	0	0
31/03/07	£277	£153	£125	£0	£0	£0	n/a	0	0
31/03/06	£0	£0	£0	n/a	n/a	n/a	n/a	n/a	0

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Highest pay bracket: less than £60,000

Listed activities

Disability
The Advancement Of Health Or Saving Of Lives

How it operates

Acts as an umbrella or resource body
Provides advocacy/advice/information
Provides services
Sponsors or undertakes research

Where it operates

Throughout England And Wales,

Who it helps

Other Defined Groups
People With Disabilities

Who works here?

Unknown number of employees
200 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 - The Unique Listening Ear - Pre-Natal Support
£9,380	02/06/2023	The funding will be used to continue to provide the listening ear telephone and email support service for families who have received a diagnosis of a rare chromosome or gene disorder for their ....more The funding will be used to continue to provide the listening ear telephone and email support service for families who have received a diagnosis of a rare chromosome or gene disorder for their disabled child. The project aims to provide information to help families come to terms with the diagnosis and understand their condition better.
National Lottery Community Fund - Listening Ear Helpline - Covid-19 Response
£9,936	22/05/2020 6	The funding will be used to offer a telephone support line for families and people living with rare chromosome disorders. The project aims to provide much needed support both for physical health and ....more The funding will be used to offer a telephone support line for families and people living with rare chromosome disorders. The project aims to provide much needed support both for physical health and mental health.
National Lottery Community Fund - Family Fun & Information Day -North East
£3,450	30/05/2019 12	The funding will be used to run a family fun and information event in Newcastle for families across the North East who have children with rare chromosome disorders.
National Lottery Community Fund - Family Fun & Information Day - Scotland
£2,500	09/11/2018 12	This group works with families who have children with rare chromosome disorders. These are life-limiting and occasionally life-threatening conditions causing often severe health problems and ....more This group works with families who have children with rare chromosome disorders. These are life-limiting and occasionally life-threatening conditions causing often severe health problems and disabilities, due to missing or rearranged DNA on one or more chromosomes. The funding will be used to run a family fun and information event in Edinburgh, building on the success of a previous similar event held in Glasgow.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (7)

Current Trustees appointed

Gender Split

Based on 6/7 persons

Age Range of Trustees: 41-79

BEN STERN Appointed: 2014, Occupation: Banker

EDNA MARGARET KNIGHT MBE

FIONA CATHERINE FULTON DE ZOETE Appointed: 2013, Occupation: Charity Volunteer

HELEN ELIZABETH CAMPBELL (Chair) Appointed: 2014, Occupation: Compliance Manager

ISOBEL HINDLE Appointed: 2013, Occupation: Retired, Other trusteeship: AZURE CHARITABLE ENTERPRISES,

SOPHIE PRISCILLA SAINTY Appointed: 2009, Occupation: Solicitor Non Practising

SHWETHA RAMACHANDRAPPA Appointed: 2019, Occupation: Consultant Clinical Geneticist

Legal constitution

Charitable company registered in England & Wales on 01/08/2005, number: 1110661
Registered at Companies House on 23/05/2005, number: 05460413

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Complaints handling
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

18 returns made; all on time

Main office

F4 The Stables
Station Road West
Oxted
Oxted
Surrey
RH8 9EE

Objectives

3.1 TO ASSIST AND RELIEVE SUFFERERS FROM RARE CHROMOSOME DISORDERS3.2 TO EDUCATE THE PUBLIC REGARDING RARE CHROMOSOME DISORDERS3.3 TO RELIEVE THE PARENTS AND CARERS OF PERSONS SUFFERING FROM RARE CHROMOSOME DISORDERS WHO ARE IN CONDITIONS OF NEED HARDSHIP OR DISTRESS

Defined Area of Benefit:

NATIONAL AND OVERSEAS

Data Sources