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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! 

  • Local Virtual Meetings for Volunteers and Members in July

    Local Virtual Meetings for Volunteers and Members in July

    Posted: Jun 28th, 2021

    As lockdown continues to ease, we hope in the not too distant future to be able to hold face to face meetings. Meantime, our Virtual meetings for Volunteers and members in their local area continue to be very popular and we have further...
  • July On-line Services

    July On-line Services

    Posted: Jun 28th, 2021

    As lockdown continues to ease, we are reviewing some of our online services throughout July and there will be some changes. We shall be updating this article regularly, so please do come back to make sure you have all the relevant...
  • OACS-1 Trial led by Professor David Jones OBE

    OACS-1 Trial led by Professor David Jones OBE

    Posted: Jun 23rd, 2021

    Are you interested in taking part in a medical research trial? We are delighted to share details of a new trial, "Obeticholic Acid for the Amelioration of Cognitive Symptoms trial - 1" designed to find out whether taking a drug known...