Latest News
Share this page

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.

  • A Call to Arms!

    Posted: Jun 28th, 2019

    A call to arms! You probably don’t think twice about treating yourself to a cappuccino or flat white. Please help to secure the future of the PBC Foundation with the price of a coffee. The service we provide is free for users,...
  • Bear Facts Issue 86

    Bear Facts Issue 86

    Posted: Jun 21st, 2019

    The latest issue of our Bear Facts magazine is available within the members section of our website.
  • New Volunteers

    Posted: Jun 5th, 2019

    We are delighted to welcome new volunteers in the following areas: Anne Goudie – Glasgow Keith Loveridge – Isle of Wight Joan Grundy and Linda Brown – Merseyside Joan Bailie – Co Antrim Grainne Doran –...
  • Fife PBC Group -  Bridge to Bridge Charity Walk

    Fife PBC Group - Bridge to Bridge Charity Walk

    Posted: Jun 4th, 2019

    Our group are planning a charity walk in aid of the PBC Foundation.  The route is from the Forth Bridges to the Tay Bridge along the beautiful Fife Coastal Path.  The route will be broken down in to 10 legs of approximately...