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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! 

  • The National Lottery Community Fund

    The National Lottery Community Fund

    Posted: Feb 25th, 2019

    We are delighted to have been awarded a grant from The National Lottery Community Fund, to hold a series of self-management workshops for people affected by PBC in Northern Ireland. We plan for the workshops to be held in the areas...
  • Healthcare begins with self-care – Introducing our new app

    Healthcare begins with self-care – Introducing our new app

    Posted: Feb 18th, 2019

    We are pleased to announce the release of our new and improved app, which is available free to download on Apple and Android mobile devices. Here’s a selection of things you can do with the new features: ·        ...
  • Bear Facts magazine

    Bear Facts magazine

    Posted: Feb 6th, 2019

    We are currently working on the final articles for the next issue of our Bear Facts magazine. Issue 85, the first of a new year will incorporate a new look, which we hope will appeal to our readers. Our content, we are sure you...