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Latest News

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


Latest News

Latest News

We have just had another poster published at EASL's ILC (International Liver Congress).We know our work has been quoted by clinicians who are trying to improve patient care within PBC: make sure more people are on the right dose, make sure more people who are not responding to Urso can get on the right therapy for them, or have opportunities to access clinical trials.

We are using your anonymised experience to push for these changes.  We are using the App to record your answers and add them to a huge melting pot of patient experiences and outcomes, which we then use to publish what is not going well for PBC patients and where we need improvements.

For that to happen, we need you. There are already over three and a half thousand downloads of the App. It has a huge amount of tools to help you live your life each and every day with PBC. One of the things that came up on PBC Day was how patients can help themselves on a daily basis.  So come and join us. Together, we can make the changes that PBC patients need: sometimes country by country, sometimes globally. This was the way we changed the name of PBC.

The App is your opportunity to do take more control of your own daily life. It has trackers for symptoms and tests. It has the latest guidelines in Lay format.  It has self-management tools. It has the entire compendium: "Living with PBC", which is an 80 page booklet on PBC.

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.

  • International PBC Day 2017

    International PBC Day 2017

    Posted: Sep 27th, 2017

    We would like to offer our deepest thanks and appreciation to everyone who gave their time in organising an event in support of International PBC Day 2017. The number of events increased to over 40 in the UK with many more worldwide...
  • BASL Meeting in Coventry

    BASL Meeting in Coventry

    Posted: Sep 22nd, 2017

      Our CEO Collette Thain MBE, attended a meeting of British Association for the Study of the Liver (BASL) at the University of Warwick in Coventry yesterday.  Invited as a guest speaker by Intercept on the subject of Evolving...
  • Statement from the Medical Advisory Committee of PBC Foundation

    Posted: Sep 21st, 2017

    Obeticholic acid (OCA) has recently been licenced in the UK and many other countries around the world for the treatment of people with PBC and is used in those who have not fully responded to or who are intolerant of Ursodeoxycholic...
  • Nursing in Practice (NIP)and Best Practice

    Posted: Sep 19th, 2017

    We will be attending the following Nursing in Practice and Best Practice events where we will have the opportunity to distribute our information to nurses, exhibitors and other attendees to raise further awareness of PBC.  Please...
  • Edinburgh Kiltwalk

    Edinburgh Kiltwalk

    Posted: Sep 19th, 2017

    On Sunday 17th September, the chairman of our board, Adrian Innes and his two colleagues, Thomas and Riley, set off to walk through Edinburgh for the annual and gruelling 26 mile Kilt Walk event.   They successfully completed...
  • PBC Day Event Updates

    Posted: Sep 7th, 2017

    Any updates pertaining to events being held on PBC Day will be posted below; Linlithgow: A Pedal for Scotland event is being held on the same day. This means that road closures affect the the town. Be aware that parking may be limited...
  • Donor Memorial Day : Edinburgh : 9th Sept

    Posted: Sep 1st, 2017

    Liver Transplant Support UK, SC046155, invite you to join them at the Royal Botanic Garden Edinburgh, on Saturday 9th September, to remember our donors by visiting The National Memorial for Organ and Tissue Donors.  Please contact...