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Latest News

This latest news is all about the App and your opportunity to get involved!!


Latest News

Latest News

If you have not already downloaded the App, click here to read about the App and to learn how to download it and how to use it.

For those of you already using the App, we need you to tell us about your experience. 

We are often told about negative patient experiences: e.g. under-dosing on Urso, liver biopsies, patients not being told their liver test results (even after asking!!), patients not being part of the discussion about second-line therapies, etc.  When we raise this, we face "yeah, but... where is your evidence?" replies, which is somewhat unhelpful.

So, we are asking you. You are our evidence!!  You live and breathe this every single day. You are the ones coming out of clinical appointments, sometimes deflated or feeling ignored, still not with the knowledge you seek.  So let us together collect the evidence. Let u use what we know, what we experience, how we live to improve the situation: not only for us, but for the generations to come.

So please, please, please fill in these surveys, use the app, become the answer.

The answer is out there. We have to ask the right people the right questions. You are the right people! We need your knowledge.

  • You Spoke. We Listened

    You Spoke. We Listened

    Posted: Feb 28th, 2020

    You spoke. We listened. New updates on the App: more information, more languages, more tools and better usability. Here is the first of a series of “How to” videos, this one focussing on helping you gain access to all the...
  • London Marathon

    London Marathon

    Posted: Feb 26th, 2020

    We are delighted to introduce Michelle Mitchell, one of our runners in this years London Marathon. Michelle shares her story and motivation to participate and raise funds for the PBC Foundation: I was always a healthy and active person,...
  • Self-management Workshops

    Posted: Feb 20th, 2020

    We are hosting a number of self-management workshops, please see details below:- 18/03/20 ANGEL & ROYAL HIGH STREET GRANTHAM LINCOLNSHIRE NG31 6PB   19/03/20 MANSFIELD MANOR HOTEL CARR BANK PARK WINDMILL LANE MANSFIELD NOTTINGHAMSHIRE NG18...
  • Cancellation of Dorset Meeting

    Posted: Feb 5th, 2020

    The Dorset/Wiltshire meeting to be held on Saturday 8th February 2020 from 11am-1pm has been cancelled due to illness. The meeting will now be held on Saturday 15th February 2020 from 11am-1pm at:- THE CROWN HOTEL WEST STREET BLANFORD...