The Hepatitis C Trust is the national UK charity for hepatitis C. It was founded and is now led and run by people with personal experience of hepatitis C and almost all of our Board, staff and volunteers either have hepatitis C or have had it and cleared it after treatment.
Historically, hepatitis C has been neglected, partly because there has been no concerted patient voice. People with hepatitis C have typically kept quiet because it is infectious and because it has been wrongly stigmatised as ‘a drug users’ disease’. The Trust is committed to changing this, by:
- raising public awareness that this is a virus that can be contracted in many ways
- ending discrimination against people living with hepatitis C
- creating an active community of patients willing to stand up and be heard
- providing information, support and representation for people with hepatitis C
The Trust’s mission
Our mission is to reverse the rapidly increasing death toll caused by hepatitis C in the UK until no-one dies from this preventable and treatable disease and, ultimately, it is all but eradicated in this country.
To achieve this we run a range of projects and services that fall broadly into five areas:
- Awareness raising
We also firmly believe in the principle of patient-centred medicine and are committed to continually increasing the employment opportunities at the Trust for people with hepatitis C, both as paid staff and as volunteers.
The history of The Hepatitis C Trust
The initial vision was to create:
- a much needed UK based website providing reliable information
- to set up a helpline manned by people who have or have had hepatitis C
- to improve services and education within the NHS
- to put pressure on the government to push hepatitis C further up their agenda because the UK has lagged so far behind other countries in terms of patient care, diagnosis, destigmatisation and raising awareness
The idea for the Trust came out of a meeting near the end of 1999 between four people with hepatitis C, two of them already cirrhotic. All of them had experienced problems getting reliable information - there was either too little or too much depending where they looked, and when there was too much, it was often contradictory.
It was also almost impossible to find any support. They were really surprised to find that there was not one single charity in the UK devoted to people with hepatitis C and yet there were over 500 HIV/AIDS charities. So they set about the legal requirements to establish the Trust. This turned out to be a surprisingly lengthy task but finally charity status was granted at the end of October 2000 and the Trust began operating in the summer of 2001.
The Patrons of The Hepatitis C Trust
We are grateful for the support of our patrons who help us to raise awareness of hepatitis C as well as of the Trust and our work and for the time and effort they contribute:
Ms Sadie Frost
Mr Robbie Williams
Miss Emilia Fox
The Marchioness of Bute
Mr Alan McGee
The Lord Mancroft
Mr Andrew Loog Oldham
The Trustees of The Hepatitis C Trust
We are grateful to the Trustees who continue to give their valuable time, support and advice:
Dr Iain Murray-Lyon - Chair
Professor Graham Foster
Mr David Enthoven
Dr Magdalena Harris
Dr Noreena Hertz
Mr Edward Mead
The Hon Mary Parkinson
Mr Charles Walsh
Sir Adrian Baillie