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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: 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! 

  • PBC Golf Day 2018

    PBC Golf Day 2018

    Posted: Apr 19th, 2018

    Our annual PBC Golf Day fundraising event takes place tomorrow, Friday 20th April at Prestonfield Golf Club in Edinburgh.  The course is in a beautiful location in the shadows of Arthur's Seat and this year the weather looks as...
  • Virgin Money London Marathon

    Posted: Apr 19th, 2018

    Good luck to all our runners in this weekends Virgin Money London Marathon.  Clive Smith, Carley O'Brien, Dave Mylett, Becky Thomas, Eugene Loh and Ms Fanny Chinn are raising funds for the PBC Foundation and we send our grateful...
  • Annual Volunteer Conference

    Annual Volunteer Conference

    Posted: Apr 11th, 2018

    Thank you to everyone who attended our 2018 Annual Volunteers Conference at the Edinburgh Marriott Hotel. The weekend was a resounding success and we enjoyed very informative presentations on new GDPR guidelines, EASL guidelines and...
  • Annual Volunteer Conference

    Annual Volunteer Conference

    Posted: Apr 6th, 2018

    We look forward to welcoming our Volunteers and guests who are attending our 2018 Annual Volunteers Conference at the Marriott Hotel in Edinburgh this weekend.  We hope you all have an enjoyable and informative time.