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 several prominent grant makers 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	£88	n/a	n/a	n/a	n/a	n/a	21
30/06/22		£587	£300	£286	£1	£855	£216	8.6	3	10
30/06/21		£335	£273	£62	n/a	n/a	n/a	n/a	n/a	10
30/06/20		£313	£247	£66	n/a	n/a	n/a	n/a	n/a	15
30/06/19		£267	£252	£15	n/a	n/a	n/a	n/a	n/a	25
30/06/18		£227	£214	£13	£0	£0	£0	n/a	0	0
30/06/17		£337	£260	£77	£0	£0	£0	n/a	0	0
30/06/16		£290	£229	£60	£0	£0	£0	n/a	0	0
30/06/15		£354	£316	£38	£0	£0	£0	n/a	0	0
30/06/14		£425	£351	£74	£0	£0	£0	n/a	0	0
30/06/13		£323	£403	£-80	£0	£0	£0	n/a	0	0
30/06/12		£263	£209	£54	£0	£0	£0	n/a	0	0
30/06/11		£216	£208	£8	£0	£0	£0	n/a	0	0
30/06/10		£235	£194	£41	£0	£0	£0	n/a	0	0
30/06/09		£87	£107	£-21	£0	£0	£0	n/a	0	0
30/06/08		£135	£54	£81	£0	£0	£0	n/a	0	0
30/06/07		£76	£21	£55	£0	£0	£0	n/a	0	0
30/06/06		£21	£14	£7	£0	£0	£0	n/a	0	0
30/06/05	*	£26	£7	£19	£0	£0	£0	n/a	0	0
30/06/04		£7	£7	£1	£0	£0	£0	n/a	0	0

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Download accounts

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

Established: 20 years

www.akusociety.org

info@akusociety.org

01223322897

Charity Commission for England and Wales

Tweets

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 works here?

Unknown number of employees
21 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.

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 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 share their experiences expand their support networks and learn a number of key skills to manage their condition more effectively.
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 "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 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 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 build relationships.
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 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 disabling health problems and there is no cure. The project aims to empower people to manage their condition more effectively through an accessible social network.This online facility will provide access to support groups and links to health and life skills training.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (7)

Gender Split

Based on 6/7 persons

Age Range of Trustees: 50-80

DR LAKSHMINARAYON RAO RANGANATH, Occupation: Doctor

JESSICA BARNES Appointed: 2022

PROFESSOR JAMES GALLAGHER Appointed: 2018, Occupation: Scientist

WILLIAM ANTHONY ESMOND Appointed: 2018, Occupation: Retired

DR DUNCAN BATTY Appointed: 2018, Occupation: Retired, Other trusteeship: 38TH SOUTH WEST CHESHIRE SCOUT GROUP (NANTWICH PARISH CHURCH),

DR NICOLAS SIREAU (Chair), Occupation: Journalist, Other trusteeship: ORCHARD,

PROFESSOR ALAN SHENKIN, Occupation: Retired Professor, Other trusteeship: SANDYMOUNT CHARITABLE TRUST,

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