Finance Score: 0
Governance Score: -1
Support Score: 5
  • No PartB
  • Mainly male board: -1
  • Grant maker support: +5
Overall GiG Score: 4 ?

THE ALKAPTONURIA SOCIETY LTD 

The Alkaptonuria Society is a patient group organisation which helps and supports people with Alkaptonuria a rare genetic disease. It helps people who suffer from Alkaptonuria and we receive worldwide enquiries. We are involved in research with the University of Liverpool to find a cure for Alkaptonuria.
Analysis by Giving is Great

Positives:

  • The charity has received backing from a grant maker recently
  • Spending has increased over the last 3 years relative to the previous period
  • There have been no material income shortfalls in recent years

Regulatory & Governance issues to consider:

  • The Board is predominantly male

Financial issues to consider:

  • A PartB annual return has not been required and so detailed financial information is not available from the online data

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
30/06/23£381£293£88n/an/an/an/an/a21
30/06/22£587£300£286£1£855£2168.6310
30/06/21£335£273£62n/an/an/an/an/a10
30/06/20£313£247£66n/an/an/an/an/a15
30/06/19£267£252£15n/an/an/an/an/a25
30/06/18£227£214£13£0£0£0n/a00
30/06/17£337£260£77£0£0£0n/a00
30/06/16£290£229£60£0£0£0n/a00
30/06/15£354£316£38£0£0£0n/a00
30/06/14£425£351£74£0£0£0n/a00
30/06/13£323£403£-80£0£0£0n/a00
30/06/12£263£209£54£0£0£0n/a00
30/06/11£216£208£8£0£0£0n/a00
30/06/10£235£194£41£0£0£0n/a00
30/06/09£87£107£-21£0£0£0n/a00
30/06/08£135£54£81£0£0£0n/a00
30/06/07£76£21£55£0£0£0n/a00
30/06/06£21£14£7£0£0£0n/a00
30/06/05*£26£7£19£0£0£0n/a00
30/06/04£7£7£1£0£0£0n/a00

Senior Staff Costs/Total Spending: 27%
Highest pay band: £60,000-£70,000
Established: 21 years

www.akusociety.org

info@akusociety.org

01223322897

Charity Commission for England and WalesCompanies HouseFacebookInstagramX
UN SDGs
?
Listed activities
  • Disability
  • Education/Training
  • The Advancement Of Health Or Saving Of Lives
GiG Classification
  • Scientific research and testing services
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
  • Elderly/Old People
  • 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.

Major supporters in last 5 years
DCMS£45,000
National Lottery Community Fund£20,000
Cambridgeshire Community Foundation£4,750
Specific Donations
Amount When
Months
To be used for
National Lottery Community Fund - AKU Patient Workshop
£10,000 02/12/2022
The funding will be used to hold a workshop for people living with the rare genetic disease Alkaptonuria. This project will provide people with the rare opportunity to meet in person where they can ....more
DCMS - Coronavirus Community Support Fund
£45,000 15/09/2020
"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 The Alkaptonuria Society
£4,750 07/04/2020
8
to provide support to 98 isolated AKU patients through phone calls, provision of exercise resources and telephone counselling sessions
National Lottery Community Fund - The AKU Society Patient Workshop
£10,000 31/01/2020
0
The organisation will use the funding to hold a workshop for people suffering from the genetic disease, Alkaptonuria. This will help bring people with the condition together to provide support and ....more
National Lottery Community Fund - The Online AKU Community Project
£299,572 15/03/2012
60
This new project aims to enable The Alkaptonuria Society Limited (AKUS) to provide an online support service for people with Alkaptonuria (AKU), a rare genetic disease. AKU leads to severely ....more

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (7)
Gender Split
Based on 6/7 persons

Age Range of Trustees: 51-81
Legal constitution
  • Charitable company registered in England & Wales on 05/12/2003, number: 1101052
  • Registered at Companies House on 27/06/2003, number: 04814120
Gift Aid
  • Registered with HMRC for Gift Aid
Policies in force
  • Bullying and harassment policy and procedures
  • Complaints handling
  • Conflicting interests
  • Engaging external speakers at charity events policy and procedures
  • Financial reserves policy and procedures
  • Internal charity financial controls policy and procedures
  • Internal risk management policy and procedures
  • Investing charity funds policy and procedures
  • Investment
  • 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
20 returns made; AR05: 44 days late,
Main office

66 DEVONSHIRE ROAD
CAMBRIDGE
CB1 2BL

Objectives

I) TO ADVANCE THE EDUCATION OF THE PUBLIC INTO ALL MATTERS RELATING TO ALKAPTONURIA DISEASE AND ITS CAUSES, EFFECTS AND TREATMENTS PARTICULARLY BY THE PROVISION AND MAINTENANCE OF AN INTERNET WEBSITE. II) TO RELIEVE THE SUFFERING OF PERSONS SUFFERING FROM THE DISEASE BY THE PROVISION OF INFORMATION AND ADVICE III) THE PROMOTION AND RESEARCH INTO THE CAUSES, EFFECTS, TREATMENT AND MANAGEMENT OF ALKAPTONURIA DISEASE AND DISSEMINATE THE USEFUL RESULTS THEREOF

Defined Area of Benefit:

NOT DEFINED

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

Tips for Selecting Charities

Which areas of philanthropy are most effective?
The text of this post is taken from an article on the Effective Altruism forum. It suggests that you can achieve the most impact by supporting causes that fight extreme poverty, improving animal welfare....more
Our Top Tips for Philanthropy
Here are some ideas to help you gain more satisfaction from your philanthropy and confidence that the causes you have selected are impactful. Engage your brain, as well as your heart You....more
How to become a Philanthropist
In this Blog we outline a strategy to help people who are new to philanthropy and for those who feel dissatisfied with the impact they are having. Effective philanthropy is immensely rewarding for donors,....more

Giving is Great