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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! 

  • Collette's Christmas Message

    Collette's Christmas Message

    Posted: Dec 23rd, 2019

    In the last vlog of 2019, Collette delivers her Christmas message. Please click the following link to view: https://youtu.be/ztkPNV9gJaY We hope you have a Merry Christmas and Happy and Prosperous 2020
  • Mail on Sunday artcile

    Mail on Sunday artcile

    Posted: Dec 17th, 2019

    PBC features in The Mail on Sunday. Thank you Pat Hagan and all contributors telling their stories. A special thanks to our Edinburgh volunteer Esther Davidson who also helps the PBC Foundation to provide free Support for Life to over...
  • CymaBay Seladelpar Drug Trial Update by Dr George Mells

    CymaBay Seladelpar Drug Trial Update by Dr George Mells

    Posted: Dec 3rd, 2019

    CymaBay Therapeutics, a drug company focussed on developing medications for liver diseases including primary biliary cholangitis (PBC), recently announced that it had stopped all studies of a potential new medication called Seladelpar....