Our charity

Haemochromatosis UK was founded as The Haemochromatosis Society in 1990, by people affected by genetic haemochromatosis. Our founder, Janet Fernau was recognised for her charitable work in 2011 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 other voluntary sector organisations and is a member of the Genetic Alliance UK.

We are 2022 GSK King's Fund IMPACT Award Winners and runner-up Small Charity of the Year in the Third Sector Awards 2022.

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, under the auspices of our Board of Trustees.

Our patrons

Our patrons are the creator and star of BBC's hit drama Call the Midwife, husband-and-wife team Heidi Thomas OBE and Stephen McGann. Heidi and Stephen have spoken movingly about how their family have been affected by the condition :

"Haemochromatosis affects so many families, including our own. Whilst huge strides have been made in understanding the condition, more work needs to be done. We are proud to offer our support by becoming Patrons of the organisation...

Haemochromatosis UK is a small charity with big shoulders. It carries the message of this serious condition to those who most need it, providing invaluable support and raising crucial awareness. It is our great honour and pride to be patrons and supporters of this charity."

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 strategy

Our trustees, volunteers, members and staff worked together throughout 2022 to develop the charity's strategy for 2023-2028, which is published here.

Our annual report and accounts

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

 

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