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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! 

  • "Treatment Prospects" Survey on the PBC Foundation App

    "Treatment Prospects" Survey on the PBC Foundation App

    Posted: Nov 29th, 2021

    You are the answer! We are working hard on your behalf again, and this time we are in front of Food and Drugs Administration (FDA) talking about the PBC patient experience. We need more treatments: not just a cure, but symptom management...
  • December On-line Services

    December On-line Services

    Posted: Nov 29th, 2021

    Our on-line services will continue during December with some changes. 1) Chris and Collette will host their Chit-Chats on a Monday and Wednesday at 4pm UK time. Join us and the community for a "coffee...
  • 25th Anniversary Celebration

    25th Anniversary Celebration

    Posted: Nov 24th, 2021

    Join us as we celebrate 25 years of the PBC Foundation Collette and Chris are hosting a two hour 25th birthday celebration on Friday 26th November between 4pm - 6pm UK time. Everyone is welcome. Grab a tea, coffee, mocktail or...