Finance Score: 1

Governance Score: -1

Support Score: 8

Reasonable growth: +1
No PartB

Only 3 Trustees: -2
Narrow trustee age band: -2
Gender balanced board: +3

Grant maker support: +8

Overall GiG Score: 8

HAEMOCHROMATOSIS UK

To SUPPORT and inform people with genetic haemochromatosis. To promote public AWARENESS of genetic haemochromatosis.To encourage and support RESEARCHinto haemochromatosis.To EDUCATE healthcare professionals and others with an interest in genetic haemochromatosis.

Analysis by Giving is Great

Positives:

The charity has received backing from multiple prominent grant makers recently
There has been reasonable growth in spending 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:

There are only 3 trustees
The Board has little diversity in terms of age
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

Established: 33 years

http://www.haemochromatosis.org.uk

office@huk.org.uk

03030401101

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
31/12/23		£424	£394	£30	n/a	n/a	n/a	n/a	n/a	40
31/12/22		£437	£457	£-20	n/a	n/a	n/a	n/a	n/a	40
31/12/21		£366	£326	£40	n/a	n/a	n/a	n/a	n/a	20
31/12/20		£318	£229	£88	n/a	n/a	n/a	n/a	n/a	40
31/12/19		£365	£325	£40	n/a	n/a	n/a	n/a	n/a	40
31/12/18		£344	£248	£96	£0	£0	£0	n/a	0	0
31/12/17		£139	£144	£-4	£0	£0	£0	n/a	0	0
30/12/16		£104	£126	£-22	£0	£0	£0	n/a	0	0
30/12/15?		£61	£77	£-16	£0	£0	£0	n/a	0	0
30/09/14		£25	£16	£9	£0	£0	£0	n/a	0	0
30/09/13	*	£31	£26	£5	£0	£0	£0	n/a	0	0
30/09/12		£35	£23	£12	£0	£0	£0	n/a	0	0
30/09/11		£22	£21	£1	£0	£0	£0	n/a	0	0
30/09/10	*	£36	£11	£25	£0	£0	£0	n/a	0	0
30/09/09		£23	£7	£16	£0	£0	£0	n/a	0	0
30/09/08		£24	£6	£18	£0	£0	£0	n/a	0	0
30/09/07	*	£36	£11	£26	£0	£0	£0	n/a	0	0
30/09/06	*	£21	£18	£3	£0	£0	£0	n/a	0	0
30/09/05		£13	£25	£-12	£0	£0	£0	n/a	0	0
30/09/04		£17	£13	£4	£0	£0	£0	n/a	0	0

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Highest pay bracket: less than £60,000

Listed activities

The Advancement Of Health Or Saving Of Lives

How it operates

Makes Grants to Organisations
Provides advocacy/advice/information
Provides other finance
Provides services

Where it operates

Northern Ireland, Scotland, Throughout England And Wales,

Who it helps

Other Defined Groups

Who works here?

Unknown number of employees
40 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

The Shears Foundation	£125,000
National Lottery Community Fund	£86,541
DCMS	£5,000
Halifax Foundation for Northern Ireland	£4,000

Specific Donations

Amount	When Months	To be used for
The Shears Foundation - Haemochromatosis UK
£60,000	20/12/2023	Raising clinician awareness of genetic haemochromatosis
National Lottery Community Fund - We need to talk about Ironing
£10,000	28/10/2022	The funding will be used to deliver patient and public awareness events for people living with the effects of Haemochromatosis. The project aims to bring people together support diagnosis and help ....more The funding will be used to deliver patient and public awareness events for people living with the effects of Haemochromatosis. The project aims to bring people together support diagnosis and help people reach their potential.
The Shears Foundation - Haemochromatosis UK
£20,000	27/10/2022	Raising clinician awareness of genetic haemochromatosis
National Lottery Community Fund - The Iron Crew - We are the One in Ten
£10,000	08/07/2022	Haemochromatosis UK is using a £10000 grant to raise awareness of the condition which sees too much iron building up in the body causing complications. Volunteers will attend events across Northern ....more Haemochromatosis UK is using a £10000 grant to raise awareness of the condition which sees too much iron building up in the body causing complications. Volunteers will attend events across Northern Ireland and share their experiences of living with Haemochromatosis and how to spot the symptoms.
National Lottery Community Fund - Haearn Cymru - Wrecsam
£10,000	13/06/2022	Haemochromatosis UK is using a £10000 grant to support volunteers to raise awareness and share their experiences of genetic haemochromatosis. The project aims to reach wider audiences ensuring more ....more Haemochromatosis UK is using a £10000 grant to support volunteers to raise awareness and share their experiences of genetic haemochromatosis. The project aims to reach wider audiences ensuring more people are diagnosed earlier and learn about managing symptoms.
The Shears Foundation - Haemochromatosis UK
£20,000	04/01/2022	Collaborative eLearning project with the Royal College of General Practitioners to improve GP training for diagnosis of genetic hameochromatosis
National Lottery Community Fund - Community support for people affected by genetic haemochromatosis
£10,000	23/03/2021 11	This project will provide telephone email on-line group support and advice to people in Scotland affected by Genetic Haemochromatosis.
National Lottery Community Fund - Community support for Welsh people affected by genetic haemochromatosis
£9,740	02/03/2021 11	Haemochromatosis UK in Monmouthshire will provide online and telephone support services for people in Wales living with a genetic condition that causes them to absorb too much iron from their diet. ....more Haemochromatosis UK in Monmouthshire will provide online and telephone support services for people in Wales living with a genetic condition that causes them to absorb too much iron from their diet. £9740 will fund staff Welsh translation printing and distributing resources and video conferencing software. Bydd Haemochromatosis UK yn Sir Fynwy yn darparu gwasanaethau cymorth ar-lein a dros y ffôn i bobl yng Nghymru sy'n byw gyda chyflwr genetig sy'n peri iddynt amsugno gormod o haearn o'u deiet. Bydd £9740 yn ariannu staff cyfieithu Cymraeg argraffu a dosbarthu adnoddau a meddalwedd fideo-gynadledda.
The Shears Foundation - Haemochromatosis UK
£25,000	02/11/2020	Genetic Haemochromatosis Education Programme (GHEP)
DCMS - VSCE CMC Fund
£5,000	09/09/2020	NET, Comic Relief and Children in Need will use this funding to provide: increased support to vulnerable people and hidden groups, thus reducing the burden on public services; reach local grassroots ....more NET, Comic Relief and Children in Need will use this funding to provide: increased support to vulnerable people and hidden groups, thus reducing the burden on public services; reach local grassroots and small organisations who can provide an on-the-ground community response to the crisis; and, support local charitable organisations to mobilise volunteers to enable better targeted support in communities through empowered local groups.
National Lottery Community Fund - Emergency Online Coordinator
£10,000	02/06/2020 6	The funding will be used to manage the increase in calls to their helpline due to the coronavirus pandemic which supports older and vulnerable people affected by Genetic Haemochromatosis.
National Lottery Community Fund - Covid Emergency Haemochromatosis Helpline Support
£6,801	15/05/2020 12	The funding will be used to pay for extra staff for the community group. The aim of the project is to be able to continue the support and expand on their services.
Halifax Foundation for Northern Ireland - Norn Iron Project - Haemochromatosis
£4,000	10/12/2019	Norn Iron Project - Haemochromatosis
National Lottery Community Fund - Your Patient Will See You Now
£10,000	16/10/2019 12	The funding will be used to scale up and improve their 'patient-expert programme' and train a further 60 to 100 additional volunteers to gain expertise in their own condition of haemochromatosis, ....more The funding will be used to scale up and improve their 'patient-expert programme' and train a further 60 to 100 additional volunteers to gain expertise in their own condition of haemochromatosis, develop their presentation skills, so they can confidently deliver educational presentations to local surgeries, stalls and at awareness raising events.
National Lottery Community Fund - Haemochromatosis Northern Ireland Support Group
£10,000	12/09/2019 11	Haemochromatosis UK, based in east Belfast, is using a grant of £10,000 for their Haemochromatosis NI Support Group project which provides and enables support group meetings known as 'Iron-Brews'. ....more Haemochromatosis UK, based in east Belfast, is using a grant of £10,000 for their Haemochromatosis NI Support Group project which provides and enables support group meetings known as 'Iron-Brews'. The group are also using the money to fund awareness raising activities to accompany World Haemochromatosis Week in 2020 and for the development and publishing of fact files to reflect the specific context of diagnosis and treatment in NI.
National Lottery Community Fund - Haemochromatosis Awareness Week ? Are you pumping too much iron?
£6,450	18/05/2018 12	This funding will be used to conduct a range of activities during Haemochromatosis Awareness Week. The aim is for local people with experience of the condition to help bring attention to the ....more This funding will be used to conduct a range of activities during Haemochromatosis Awareness Week. The aim is for local people with experience of the condition to help bring attention to the symptoms, effects and treatment to help earlier diagnosis for people with excess iron in their system.

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Data sourced from Donors via 360 Giving

How is it governed?

Trustees (3)

Current Trustees appointed

Gender Split

Age Range of Trustees:

DR FLORIAN JAECKLE Appointed: 2023, Occupation: Academic

DR HEIDI FULLER Appointed: 2023, Occupation: Academic

SERENA TER KUILE Appointed: 2023

Legal constitution

Charitable company registered in England & Wales on 17/12/1990, number: 1001307
Registered at Companies House on 20/09/1990, number: 02541361

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
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
Social media policy and procedures
Trustee conflicts of interest policy and procedures
Trustee expenses policy and procedures
Volunteer management

Filing Record

20 returns made; AR13: 116 days late, AR10: 101 days late, AR07: 19 days late, AR06: 20 days late,

Main office

The Flaxmill
Flaxmill Lane
Pinchbeck
Spalding
Lincolnshire
PE11 3YP

Objectives

1)TO PROVIDE FOR PERSONS WITH HEREDITARY HAEMOCHROMATOSIS OR ASSOCIATED DISEASES HELP WITH THOSE PROBLEMS(INCLUDING BUT NOT LIMITED TO DIAGNOSIS,MEDICAL CARE,TREATMENT & FINANCIAL BURDEN) RESULTING FROM THE DISEASES & TO PROVIDE SUCH OTHERS CHARITABLE RELIEF AS THE SOCIETY MAY THINK FIT.2.)TO UNDERTAKE FOR THE PUBLIC BENEFIT RESEARCH INTO THE DISEASES & TO PUBLISH THE USEFUL RESULTS OF SUCH RESEARCH. 3.)TO ADVANCE THE EDUCATION OF THE GENERAL PUBLIC & THE MEDICAL PROFESSION INTO THE CAUSES OF:(A) INCREASING THE PROPORTION OF HAEMOCHROMATOTICS DIAGNOSED AS SUCH (B) PROMOTING DIAGNOSIS AT AN EARLY STAGE BEFORE THE ONSET OF IRREVERSIBLE ORGAN DAMAGE.

Defined Area of Benefit:

NOT DEFINED

Data Sources