The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC
The PBC Foundation is the only UK organisation that specifically helps those affected by PBC: patients, their carers and their families, and health professionals. We offer a range of services that include a telephone helpline. The helpline is manned 24 hours a day, 365 days a year but we would hope that non-urgent calls are within (or around) office hours. The helpline has been used by those suspecting they may have PBC and are looking for assistance in diagnosis, newly diagnosed patients looking for information, carers looking for support, Foundation members whose PBC has progressed or changed and also family members who have a loved one going through end stage liver disease looking for support and also practical information at a most difficult time. The staff manning the helpline are trained, supported and very experienced. Should you wish to call the helpline, the number is 0131 556 6811.
Publications – “The Bear Facts”
On principal, we believe that every single person affected by PBC has the right to free information, and we will not charge for this information. Nor will we charge a membership fee. Part of the free information is exhibited on this website. We also have two publications brimming with information. The first is our compendium, “Living with PBC”, which is a comprehensive folder on all matters PBC. It covers subjects ranging from medications to the Disability Discrimination Act, incorporating pages on pregnancy, symptom management and the emotional and psychological aspects of self-management. Our other publication is our quarterly newsletter, “The Bear Facts.” This magazine has a light approach and includes humour, fund or awareness raising campaigns, the latest PBC news and also specialist clinic pages. We do charge postage for sending the Bear Facts overseas, but e-copies are free.
We continue to advocate for the interests of patients around the globe, which has seen numerous successes including the introduction of the PBC40 and more recently, the name change. See an example of a speech advocating to European Liver Specialists below;
We host a wide range of events which include members’ meetings, self-management sessions and medical conferences. The self-management sessions have been enormously successful throughout the UK and this is something in which we are very much leading the field. Since 2014 we have worked with other support bodies for people with long term conditions to mutually benefit each others members and level of experience. We aim to host two conferences each year, so look out for dates in the Bear Facts and within the members’ section of this website. The conferences will feature a talk on PBC by an eminent PBC specialist and will include a general question and answer session.
We also host members’ meetings around the UK and in Ireland. These are hosted by Volunteers within our National Volunteer network. These meetings are mainly social but also provide the opportunity to discuss PBC with other patients (and their families!), often sharing important hints and titbits of useful information.
If you have any comments about our services or would like to see us develop new ones, then please contact us at firstname.lastname@example.org