About us 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 7 trustees, under the leadership of the Chair of Trustees, plus a board observer. The trustees may be contacted by emailing [email protected]. Michelle Weerasekera - appointed as Trustee, October 2018 and as Chair of Trustees, March 2020 Dr Stuart McDonald - appointed pre-2014 Katharine Hough - appointed July 2018 Dr Jeremy Shearman - appointed March 2020 Josh Kaile - appointed April 2020 Phil Coathup - appointed April 2020 Alan Walls - appointed April 2020 Philip Briggs - appointed May 2020