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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! 

  • A Call to Arms!

    Posted: Jun 28th, 2019

    A call to arms! You probably don’t think twice about treating yourself to a cappuccino or flat white. Please help to secure the future of the PBC Foundation with the price of a coffee. The service we provide is free for users,...
  • Bear Facts Issue 86

    Bear Facts Issue 86

    Posted: Jun 21st, 2019

    The latest issue of our Bear Facts magazine is available within the members section of our website.
  • New Volunteers

    Posted: Jun 5th, 2019

    We are delighted to welcome new volunteers in the following areas: Anne Goudie – Glasgow Keith Loveridge – Isle of Wight Joan Grundy and Linda Brown – Merseyside Joan Bailie – Co Antrim Grainne Doran –...
  • Fife PBC Group -  Bridge to Bridge Charity Walk

    Fife PBC Group - Bridge to Bridge Charity Walk

    Posted: Jun 4th, 2019

    Our group are planning a charity walk in aid of the PBC Foundation.  The route is from the Forth Bridges to the Tay Bridge along the beautiful Fife Coastal Path.  The route will be broken down in to 10 legs of approximately...