Latest News
Share this page

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 Itch Survey

    New Itch Survey

    Posted: Apr 27th, 2021

    We are delighted to be sharing this news with you, particularly if you are someone with itch caused by your PBC.  We have had a number of successful surveys on our App, which are already making a difference in terms of PBC knowledge...
  • Local Virtual Meetings for Volunteers and Members in May

    Local Virtual Meetings for Volunteers and Members in May

    Posted: Apr 27th, 2021

    Our Virtual meetings for Volunteers and members in their local area continue to be very popular. We are therefore arranging further meetings throughout May. If you are feeling isolated, or would just like a chat with others living...
  • May On-line Services

    May On-line Services

    Posted: Apr 27th, 2021

    As lockdown eases, we are continuing our online services throughout May with some slight changes.  We shall be updating this article regularly, so please do come back to make sure you have all the relevant links. There are...


    Posted: Apr 13th, 2021

    A statement from the PBC Foundation Medical Advisory Committee This advice is intended for those resident in the UK. Covid vaccines are being rolled out in many countries and different countries have adopted different practices. While...