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.

  • Peebles coffee morning raises £600 for PBC Foundation

    Peebles coffee morning raises £600 for PBC Foundation

    Posted: Jul 15th, 2016

    On Saturday, 9th July our Regional Volunteer for the Scottish Borders, Ena, hosted a coffee morning in the scenic town of Peebles in aid of the PBC Foundation.  The morning was very well attended, and all the team were kept on...
  • General News update: 8th July 2016

    General News update: 8th July 2016

    Posted: Jul 8th, 2016

    Hello everyone.  You will have received your Spring 2016 edition of The Bear Facts and hopefully read it all by now? Hopefully you will have seen that The PBC Foundation is celebrating its 20th birthday this year.  This is...
  • It's your time

    It's your time

    Posted: Jul 6th, 2016

    There have been many key developments for people with PBC over the years. Alongside the name change, there is a growing awareness of PBC in the medical and wider community. We are not claiming credit for this, but instead the collective...