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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:
Android device:

You can watch our CEO, Collette Thain MBE, introduce the app here:

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! 

  • New hope on the horizon for PBC patients

    New hope on the horizon for PBC patients

    Posted: Jul 28th, 2022

    Excellent article this week in The Times 'Future of Healthcare' Raconteur supplement highlighting your unmet needs and the research underway to develop new treatments for PBC and its symptoms. Click here to read the article: Future...
  • Online and Face to Face Meetings for Volunteers and Members in August

    Online and Face to Face Meetings for Volunteers and Members in August

    Posted: Jul 25th, 2022

    As we return to a degree of normality, some of our volunteers are looking to organise more face to face meetings whilst others continue with online meetings. Please revisit this page for any updates.   London & Hertfordshire...
  • August Online Services

    August Online Services

    Posted: Jul 25th, 2022

    Our on-line services will continue during August. 1) Robert and staff will host their Chit-Chats on a Monday and Wednesday at 4pm UK time on Facebook. Look out for the occasional...