Finance Score: 1
Governance Score: 0
Support Score: 4
  • Reasonable growth: +1
  • No PartB
  • No volunteer policy: -2
  • Dynamic board: +3
  • Mainly female board: -1
  • Grant maker support: +4
Overall GiG Score: 5 ?

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 predominantly female
  • Over half the Board have joined recently

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£18n/an/an/an/an/a20
31/12/21£164£103£60n/an/an/an/an/a20
31/12/20?£163£164£-1n/an/an/an/an/a20
30/09/19£241£137£104n/an/an/an/an/a20
30/09/18£104£88£16£0£0£0n/a010
30/09/17£73£60£12£0£0£0n/a00
30/09/16£49£48£1£0£0£0n/a00

Highest pay bracket: less than £60,000
Established: 8 years

www.camraredisease.org

info@camraredisease.org

07725039780

Charity Commission for England and WalesFacebookInstagramX
UN SDGs
?
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'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
Cambridgeshire Community Foundation - Mt Story My Way
£4,000 14/06/2023
3
to hold a pilot workshop with YP with rare diseases to vocalise their needs without words to create a blueprint that is meaningful to them and will shape future organisation strategy
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
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

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (7)
Current Trustees appointed
Gender Split

Age Range of Trustees:
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

Charity Commission for England and Wales
360 Giving
CharityBase
Authorised officials of this charity can add information to this page (including a Donate Now button) for no cost

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