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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! 

  • Online Survey Research Opportunity:  Study on Liver Disease

    Online Survey Research Opportunity: Study on Liver Disease

    Posted: Oct 29th, 2021

    Global Perspectives is recruiting patients who have been diagnosed with a liver disease to participate in an online survey study. The purpose of this study is to understand the experience of patients with liver disease, including symptoms...
  • Local Virtual Meetings for Volunteers and Members in November

    Local Virtual Meetings for Volunteers and Members in November

    Posted: Oct 27th, 2021

    Please revisit this page for notifications of any new meetings and how to join. Nottinghamshire Members Meeting - Tuesday 2nd November from 7pm-8.30pm. Event URL: https://pbcfoundation.clickmeeting.com/nottinghamshire-members-meeting Event...
  • November On-line Services

    November On-line Services

    Posted: Oct 27th, 2021

    Our on-line services will continue during November, 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 with friends",...