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 General Meeting (Saturday 4th April 2020 at 4pm, via video/audio conference) - agenda

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 has 5 trustees with a Chair and Honorary Treasurer. The trustees may be contacted by emailing [email protected].

  • Michelle Weerasekera - appointed as Trustee, October 2018 and as Chair of Trustees, March 2020
  • Roger Keyte (Honorary Treasurer) - appointed December 2016
  • Dr Stuart McDonald - appointed pre-2014
  • Katharine Hough - appointed July 2018
  • Dr Jeremy Shearman - appointed March 2020