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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.

  • Webinars are go!

    Webinars are go!

    Posted: Mar 15th, 2017

    Our series of Webinars are underway, but it isn't too late to join in. Previous webinar recordings are available in the videos page of our Members' section   Friday 17th March, 3pm GMT: Relaxation Techniques This webinar is exactly...
  • Obeticholic acid approved by NICE for the treatment of patients with PBC

    Obeticholic acid approved by NICE for the treatment of patients with PBC

    Posted: Mar 2nd, 2017

    First new medication for Primary Biliary Cholangitis in nearly 20 years   The PBC Foundation today welcomes the news that the first new treatment for 20 years has become available for patients with PBC. Affecting 22,000 patients...