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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! 

  • Three Peaks for PBC

    Three Peaks for PBC

    Posted: Aug 10th, 2016

    THREE PEAKS CHALLENGE The PBC Foundation would like to invite you to join them along with Intercept Pharmaceuticals to take part in the “Three Peaks Challenge” with the last peak being on September 11th ( International...
  • PBC Day Afternoon Tea

    PBC Day Afternoon Tea

    Posted: Aug 10th, 2016

      You are invited to join the PBC Foundation for afternoon tea at the Old Waverley Hotel, 43 Princes Street, Edinburgh EH2 2BY on Sunday 11th September 2016 from 2pm-5pm. Come and join our volunteers and members of the PBC community...
  • Your chance to be heard : research participants needed

    Your chance to be heard : research participants needed

    Posted: Aug 1st, 2016

    Your opportunity to take part in a study to research the patient experience of living with Primary Biliary Cholangitis (formerly known as Primary Biliary Cirrhosis). Download a larger copy of the study advert here: Patient recruitment...