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Latest News

All the latest PBC Foundation news; events, announcements, surveys, and more.

Latest News

Latest News

Thank you, thank you, thank you.

There are a huge number of you who have already contributed to the App, and you are amazing. Already you have made a huge difference (details below).

For those of you who haven't downloaded the App yet, please do so. There are a huge number of benefits for you:

1) Information including clinical guidelines, FAQs, our compendium "Living with PBC" and a glossary of terms to ensure you have all the information you need.

2) Self-management tools such as test trackers, symptom trackers, weight/dose of Urso trackers, links to helpful information, and interactive tools to help you each and every day.

3) Surveys are there to learn about your experience. The surveys generate collective, anonymised data which tell us what percentage of people are on Urso, on the appropriate dose of Urso, seeing a hepatologist or a gastro, or how many people have certain symptoms.

Already, this data is being shared at important national and international conferences.  As an example, there is now a nationwide UK audit of PBC services to see how many patients do or do not receive the recommended care. This audit will then guide the improvement in patient services. One of the major drivers that convinced clinicians for the need of this audit was a piece sharing the data from the App.

You can download the App from your own app store or you can use these links.

Apple device: https://apps.apple.com/gb/app/pbc-foundation-self-management/id1225705494
Android device: https://play.google.com/store/apps/details?id=uk.org.pbcfoundation.pbcapp1

You can watch our CEO, Collette Thain MBE, introduce the app here: https://youtu.be/DDTe0IoDrVQ

The revolution is coming. And we are the answer.

So please, please, please fill in these surveys, use the app, be the solution: not just for our generation, but for countless others after us.

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

  • Self Management Workshop | Dumfries | 10th May 2016

    Self Management Workshop | Dumfries | 10th May 2016

    Posted: Apr 29th, 2016

    We are hosting self-management development sessions in Dumfries on Tuesday 10th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater for...
  • Self Management Workshop | Carlisle | 9th May 2016

    Self Management Workshop | Carlisle | 9th May 2016

    Posted: Apr 29th, 2016

    We are hosting self-management development sessions in Carlisle on Monday 9th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater for...
  • Self Management Workshop | Ayr | 11th May 2016

    Self Management Workshop | Ayr | 11th May 2016

    Posted: Apr 29th, 2016

      We are hosting self-management development sessions in Ayr on Wednesday 11th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater...
  • London Conference 2016

    London Conference 2016

    Posted: Apr 29th, 2016

    Saturday 21 May 2016    The PBC Foundation is holding a conference in London, hosted by the Royal Free Hospital, on Sat 21st March Itinerary 11.00am         Registration 11.15am        ...
  • Meeting in Birmingham | April 5th, 2016

    Meeting in Birmingham | April 5th, 2016

    Posted: Apr 1st, 2016

      On Tuesday 5th April our volunteer, Diane, is holding a meeting in Birmingham. So if you live nearby or happen to be in the area, do pop along.  PBC Foundation Meeting in Birmingham Diane (Regional Volunteer...