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: 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! 

  • Success For Our Seven Marathon Runners

    Success For Our Seven Marathon Runners

    Posted: Apr 29th, 2019

    We would like to congratulate our seven runners on successfully completing the Virgin Money London Marathon, on the 28th April.  We look forward to sharing their fantastic achievements in The Bear Facts magazine. 
  • Easter Office Closure

    Easter Office Closure

    Posted: Apr 18th, 2019

    Please note that the PBC Foundation office will be closed on Friday 19th April, 2019. We will reopen on Monday 22nd April at 9am. Happy Easter to all.
  • Office Closed Monday 08th April 2019

    Posted: Apr 4th, 2019

    As our Volunteers Conference is taking place over this weekend, our office will be closed on Monday 08th April. If you telephone us over the weekend or Monday, please leave your name, telephone number and any message and we will...
  • Annual Volunteers Conference 2019

    Annual Volunteers Conference 2019

    Posted: Apr 1st, 2019

    Our Annual Volunteers Conference is approaching fast and will be held at the Edinburgh Marriott Hotel on Saturday 06th April.  We will be welcoming some thirty Volunteers from throughout the UK and are sure it will be a most enjoyable...