Finance Score: 1

Governance Score: -2

Support Score: 4

Reasonable growth: +1
No PartB

No volunteer policy: -2
Dynamic board: +3
All female board: -3

Grant maker support: +4

Overall GiG Score: 3

CAMBRIDGE RARE DISEASE NETWORK

CamRARE build networks to improve outcomes for people affected by rare diseases. Regionally we support affected families through community activities. We provide a platform to showcase rare disease research, technologies, treatments and care through events like RAREsummit & RAREfest. We hold a Companies Forum to educate and exchange knowledge on rare disease. We undertake and support research.

Analysis by Giving is Great

Positives:

The charity has received modest backing from several prominent grant makers recently
There has been reasonable growth in spending over the last 3 years relative to the previous period, despite a decline more recently
There have been no material income shortfalls in recent years
The Board appears to be dynamic in terms of composition

Regulatory & Governance issues to consider:

Although this charity works with volunteers it does not have a Volunteer Management policy
The Board is completely female

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data
There has been a change of accounting period recently, so trends may be hard to determine

Financial Data ?

Income & Spending ?

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

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
31/12/22	£141	£123	£18	n/a	n/a	n/a	n/a	n/a	20
31/12/21	£164	£103	£60	n/a	n/a	n/a	n/a	n/a	20
31/12/20?	£163	£164	£-1	n/a	n/a	n/a	n/a	n/a	20
30/09/19	£241	£137	£104	n/a	n/a	n/a	n/a	n/a	20
30/09/18	£104	£88	£16	£0	£0	£0	n/a	0	10
30/09/17	£73	£60	£12	£0	£0	£0	n/a	0	0
30/09/16	£49	£48	£1	£0	£0	£0	n/a	0	0

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Download accounts

Highest pay bracket: less than £60,000

Established: 8 years

www.camraredisease.org

info@camraredisease.org

07725039780

Charity Commission for England and Wales

Tweets

Listed activities

Disability
Education/Training
The Advancement Of Health Or Saving Of Lives

GiG Classification

Other specialist outpatient services

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

Children/Young People
Other Charities Or Voluntary Bodies
People With Disabilities
The General Public/Mankind

Who works here?

Unknown number of employees
20 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
Cambridgeshire Community Foundation - Unique Feet
£3,400	06/07/2023	to provide enrichment activities such as swimming, climbing and inclusive sports as well as visits to spend time with animals such as the Raptor Foundation, shepreth wildllife park and horse riding ....more to provide enrichment activities such as swimming, climbing and inclusive sports as well as visits to spend time with animals such as the Raptor Foundation, shepreth wildllife park and horse riding for up to 160 children with rare diseases and their carers
DCMS - Coronavirus Community Support Fund
£8,020	07/07/2020	"The fund aims to:1) To reduce closures of essential charities that provide essential services to vulnerable groups during the COVID-19 crisis by ensuring they have the financial resources to ....more "The fund aims to:1) To reduce closures of essential charities that provide essential services to vulnerable groups during the COVID-19 crisis by ensuring they have the financial resources to operate, thereby reducing the burden on public services.2) To ensure essential services are provided to vulnerable people, both in the short and long term through increased community support through the work of charitable organisations."
Cambridgeshire Community Foundation - Grant to Cambridge Rare Disease Network
£3,270	28/04/2020 3	to continue running their Unique Feet community activity group for 40 children and their families who have a rare disease. The groups include dancing and yoga over Zoom.
National Lottery Community Fund - Cambridge Rare Disease Network Development Project
£9,600	07/03/2018 12	This project will provide activities to children with rare diseases, improving confidence, support and self-esteem.
National Lottery Community Fund - Cambridge Rare Disease Network Development Project
£10,000	16/09/2015 12	The organisation will use the funding to develop a business model and campaign strategy to support its growing network of voluntary organisations, research and health industry groups. This will ....more The organisation will use the funding to develop a business model and campaign strategy to support its growing network of voluntary organisations, research and health industry groups. This will enable the group to develop a business strategy and new awareness raising campaigns to promote the network and associated partners, providing more support and advice to people living with rare diseases to improve wellbeing and health.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (6)

Current Trustees appointed

Gender Split

Age Range of Trustees:

EMMA GREEN (Chair) Appointed: 2022

LORETTA MACINNES Appointed: 2022

DR SARAH MARIA LEITER Appointed: 2017, Occupation: Medical Doctor

GEMMA CHANDRATILLAKE Appointed: 2017, Occupation: Education Lead

SARAH FAIRCLIFFE Appointed: 2022, Other trusteeship: KJV COMMUNITY CHILDREN'S CHOIR CHARITABLE INCORPORATED ORGANISATION,

SUSAN BERRY Appointed: 2019, Occupation: Director

Legal constitution

Charity registered in England & Wales on 05/04/2016, number: 1166365

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Conflicting interests
Safeguarding vulnerable beneficiaries

Filing Record

7 returns made; all on time

Main office

B C S
5 Station Court
Station Road
Great Shelford
CAMBRIDGE
CB22 5NE

Objectives

1) THE RELIEF OF SICKNESS OF PERSONS WITH RARE DISEASES, IN PARTICULAR BUT NOT EXCLUSIVELY BY THE PROVISION OF SUPPORT, ADVICE AND INFORMATION FOR SUCH PERSONS THEIR FAMILIES, CARERS AND THOSE WORKING WITH AFFECTED INDIVIDUALS.2)TO ADVANCE THE EDUCATION OF THE PUBLIC IN GENERAL ON THE SUBJECT OF RARE DISEASES AND RELATED SYNDROMES AND TO PROMOTE RESEARCH FOR THE PUBLIC BENEFIT IN ALL ASPECTS OF THAT SUBJECT AND TO PUBLISH THE USEFUL RESULTS.

Data Sources