Skip over main navigation
  • Sign up
  • Log in
  • Basket: (0 items)
Haemochromatosis UK
Helpline Join us Donate
  • Twitter
Menu
  • About us
    • What is genetic haemochromatosis
    • Our team
    • Our charity
    • Our clinical advisors
    • Careers
    • Contact us
  • Get help
    • Coronavirus advice
    • Newly diagnosed?
    • Common symptoms
    • Treatment & care
    • Can I donate blood?
    • Living well with GH
    • Talking about GH
    • Genetics of haemochromatosis
    • FAQs
  • The difference we make
    • The impact of iron overload
    • APPG on GH
    • State of The Nation
    • Our projects
      • Helplines
      • Venesection best practice
      • Intelligent imaging
      • Travellers outreach
      • Community outreach
      • Expert patient
  • Get involved
    • Join us
      • Member benefits
    • Donate
    • Fundraise for us
      • Be a fundraiser
      • What will be your legacy?
      • In memory giving
      • Fundraising ideas
      • Challenge events
      • Online fundraising
      • Big Rusty Quiz
    • Be a catalyst
      • Can you help us, help others?
      • Become a catalyst
      • Become a friend
    • Be a volunteer
      • Change the world
      • Current opportunities
    • Campaign with us
    • Shop
  • News and events
    • News
    • Our blog
    • What's on?
    • The Iron Games 2022
    • Socials
  • Healthcare professionals
    • Introduction to GH for Clinicians
    • Clinical guidelines
    • Clinician events
    • Primary care
      • Diagnosis & care
      • GP training
      • Pharmacy
    • Secondary care
      • Nursing
      • Arthropathy
      • Venesection Best Practice
    • Medical research grants
  • Admin
    • Log in
  • Basket: (0 items)
  1. About us
  2. Our charity

Our charity

Haemochromatosis UK was founded as The Haemochromatosis Society in 1991, by people affected by genetic haemochromatosis. Our founder, Janet Furnau was recognised for her charitable work in 2014 with a MBE. Our charity is still run by people with genetic haemochromatosis.

We work to support anyone affected by the condition, across three key areas :

  • Support
  • Education & Awareness
  • Medical Research

The charity works closely with its counterparts in other countries; it is a member of Haemochromatosis International (HI), the European Federation of Associations of Patients with Haemochromatosis (EFAPH) and the Genetic Alliance.

Our charitable constitution

Our charity is a UK registered charity regulated by the Charity Commission and OSCR, the Scottish charity regulator. We are a company limited by guarantee, registered with Companies House (number 2541361).

The charity is run in accordance with our constitution for the benefit of people affected by genetic haemochromatosis in the United Kingdom, under the auspices of our Board of Trustees.

Our values

In mid 2019, our Board of Trustees met to discuss and agree a set of organisational values for our charity. These complement our organisational policies and are :

People first

We act as the voice for change and improvement in the diagnosis and care of those affected by genetic haemochromatosis

Living well

Our work supports living well with genetic haemochromatosis with a focus on good mental and physical health

Health equality

We champion healthcare that is equal, accessible and non-discriminatory

Clear communication

We make sense of the science and are clear where evidence exists and where it does not

Collaborative & co-operative

We bring people together to solve problems and help those affected by genetic haemochromatosis

Responsible & accountable

We are open and transparent in our work as an independent charitable patient body

Our annual report and accounts

We publish our annual report and accounts for the preceding calendar year, each Spring. Previous issues may be downloaded below :

2020 Annual Report & Accounts

2020 Minutes of Annual General Meeting

2019 Annual Report & Accounts

2019 Minutes of Annual General Meeting 

2018 Annual Report & Accounts

2017 Annual Report & Accounts

2016 Annual Report & Accounts

2015 Annual Reports & Accounts

2014 Annual Report & Accounts

Board of Trustees

The charity presently has 5 trustees. 

  • Phil Coathup (Chair) - appointed April 2020
  • Dr Stuart McDonald - appointed pre-2014
  • Katharine Hough (Safeguarding Lead Trustee) - appointed July 2018
  • Dr Jeremy Shearman - appointed March 2020
  • Josh Kaile - appointed April 2020

Published: 18th December, 2019

Updated: 8th January, 2021

Author:

Share this page
  • Email
  • Facebook
  • Twitter

Latest

  • HUK Calls for Screening of Haemochromatosis in Adults

    HUK Calls for Screening of Haemochromatosis in Adults

    Our charity has responded to the UK National Screening Committee consultation on screening for haemochromatosis in adults.

  • APPG on GH : Blood donor services (February 2021)

    APPG on GH : Blood donor services (February 2021)

    The Spring All-Party Parliamentary Group on Genetic Haemochromatosis will be held online via Zoom webinar on Wednesday 17th February at 2.30pm.

  • Understanding your blood test results

    Understanding your blood test results

    Blood test results can be baffling - our guide helps to explain what each test is about.

  • Cardiomyopathy & Genetic Haemochromatosis

    Cardiomyopathy & Genetic Haemochromatosis

    Cardiomyopathy is a heart condition where the walls of the heart muscle are thicker than usual. Poeple with GH can develop cardiomyopathy.

Most read

  • Coronavirus Update

    Coronavirus Update

    Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here. Updated 18th January 2021.

  • Ask the doctor

    On Thursday 26th March 2020, we put our members' questions about genetic haemochromatosis and coronavirus to Dr Susan Hancock FRCGP, a member of our Clinical Advisory Panel.

  • Ask the doctor (part 2)

    On Thursday 2nd April 2020, we put further members' questions about genetic haemochromatosis and coronavirus to Dr Susan Hancock FRCGP, a member of our Clinical Advisory Panel.

  • CV19 Vaccine & Haemochromatosis

    CV19 Vaccine & Haemochromatosis

    Advice and information on the new Covid-19 vaccines for people affected by genetic haemochromatosis. Updated 6th January 2021.

  • Liver cancer ten times more likely in men with GH

    Liver cancer ten times more likely in men with GH

    Men who have the Western world’s most common genetic disorder, haemochromatosis, are ten times more likely to develop liver cancer, according to a major new study.

  • UK National Screening Committee Consultation

    UK National Screening Committee Consultation

    This month, UK National Screening Committee has commenced a consultation on screening for genetic haemochromatosis in adults.

  • What's it like becoming a GH blood donor?

    What's it like becoming a GH blood donor?

    Our Social Media Community and Volunteer Manager, Elizabeth reflects on her experiences of the new blood donation scheme and shares some details from behind-the-scenes.

  • 2020 Conference Postponement and AGM Update

    2020 Conference Postponement and AGM Update

    Haemochromatosis UK have taken the very difficult decision to postpone this year’s conference which was to be held in Manchester on Saturday the 4th of April due to the Covid-19 outbreak.

  • Frequently Asked Questions About Genetic Haemochromatosis

    Frequently Asked Questions About Genetic Haemochromatosis

    We have collated many of the frequently asked questions about genetic haemochromatosis here, for ease of reference.

  • Half Marathon Completed in Honour of Dad!

    Half Marathon Completed in Honour of Dad!

    Michael Baker has completed his half marathon around Loughborough on Sunday. His appeal in memory of his Dad has raised over £1800 so far.

Latest tweet

Sign up for our monthly newsletter

Please enter your first name
Please enter your last name
Please enter your email address Please enter a valid email address (e.g. [email protected])
  • Contact us
  • FAQs
  • Our Policies
  • Privacy Policy
  • Accessibility
  • Sitemap
  • Twitter
  • Facebook
  • YouTube

Registered office: Henrith Business Centre, 3 Enterprise Way, Pinchbeck, Spalding PE11 3YR.
Phone: 03030 401 101 / Email: [email protected] / Open: Mon–Fri 9am–3pm

Registered as Charity number 1001307 and SCO41701. Company Limited by Guarantee No. 2541361.
Copyright © 2020 Haemochromatosis UK. All Rights Reserved.

© 2020 Haemochromatosis UK