About Us

The Hepatitis C Trust is the national UK charity for hepatitis C and has been operating since 2001. It is an entirely patient-led and patient-run organisation: all of its staff, both paid and voluntary, either have hepatitis C or have had it and have 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 stigmatized 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
• ensuring that people infected with it are not discriminated against
• creating an active community of patients willing to stand up and be heard

The Trust was enormously helped by Anita Roddick’s decision to speak out about her hepatitis C, which she contracted through contaminated blood after the birth of her daughter, more than 30 years before she was diagnosed. She worked very closely with the Trust, becoming a patron, before her sudden death in 2007.

• raise awareness
• provide information, support and representation for people with hepatitis c

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.

At the Hepatitis C Trust all members of staff have or have cleared the illness.

Whilst our primary aim is to support, inform and effect change we also feel that creating a dynamic organisation staffed by those directly affected by hepatitis C affirms an important message - that people affected by this disease can, with a little understanding, participate in a meaningful way. This ethos has created a passionate, positive and mutually supportive working atmosphere.

The team has grown from a couple of volunteers working every available hour to an ever expanding group of people whose breadth of expertise and understanding of the issues puts us in a unique position within the field of hepatitis C. Click here to read our personal stories.

Charles Gore, a founding member of the charity, is considered a foremost authority on hepatitis C.

Charles Gore set up and is the Chief Executive of The Hepatitis C Trust, the national UK hepatitis C charity.

• Charles was the first President of the European Liver Patients Association in 2004 -2006 and has been the expert patient witness for two National Institutes of Health and Clinical Excellence technology appraisals.
• He has been a consultee to the Skipton Fund when it was first set up and to the Scottish Executive and Welsh Assembly for their respective hepatitis C Action Plans.
• He has authored 2 reports auditing the National Health Service's implementation of the English hepatitis C Action Plan and has co-authored a number of papers on the use of Interactive Health Communication Applications.
• Charles has been instrumental in establishing World Hepatitis Day on May 19th and was elected President of the World Hepatitis Alliance, the umbrella organisation representing some 200 patient groups worldwide set up to run World Hepatitis Day.

• 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 4 people with hepatitis C, 2 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 - 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 int the summer of 2001.

To start with, there was just a Board of 3 trustees and one member of staff. Shortly the Board expanded to 9 people and another person – of course, someone with hepatitis C – came to do occasional voluntary work but stayed on as a full-time member of staff. For the first 2 years or so, everything was done on a shoe-string: neither of the staff was paid and one of the trustees provided free space in his office. In 2004 the Trust moved to new offices just by Guy’s Hospital at London Bridge and began steadily expanding.

We are grateful for the support of our patrons who help us to raise awareness of the Hepatitis C Trust, as well as for the time and effort they contribute.

The Marchioness of Bute
Ms Emilia Fox
Ms Sandie Shaw
Mr Robbie Williams
Mr Alan McGee
The Lord Mancroft
Dame Anita Roddick

We are grateful to the Trustees who continue to give their valuable time, support and advice.

Mrs Francesca Cadbury
Dr Avril Crollick
Ms Kate Docherty
Dr Noreena Hertz
Mr Ed Mead
Dr Iain Murray-Lyon
The Hon Mary Parkinson
Mr Charles Walsh

Registered charity number 1104279