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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! 

  • Looking Back, Looking Forward

    Looking Back, Looking Forward

    Posted: Jun 29th, 2022

    As Collette stands down as CEO, join us today, Wednesday 29th June at 4pm for a simultaneous Clickmeeting/Facebook session with Collette, Robert and staff as we look back, look forward and have a giggle. Details to join the Clickmeeting...
  • Online and Face to Face Meetings for Volunteers and Members in July

    Online and Face to Face Meetings for Volunteers and Members in July

    Posted: Jun 28th, 2022

    As we return to a degree of normality, some of our volunteers are looking to organise more face to face meetings whilst others continue with online meetings.  Please revisit this page for any updates. Online meetings London &...
  • July Online Services

    July Online Services

    Posted: Jun 28th, 2022

    Our on-line services will continue during July. 1) Robert and staff will host their Chit-Chats on a Monday and Wednesday at 4pm UK time on Facebook. This month, we also have a...
  • Online and Face to Face Meetings for Volunteers and Members

    Posted: Jun 21st, 2022

    Online members' meetings  London & Hertfordshire Virtual Members Meeting – Monday 20th June 2022 – 7.30pm-9pm Join Zoom Meeting by clicking on the link below:https://us04web.zoom.us/j/9067119649?pwd=OHJmeElRZVMxMFZEcTh1eTRIVzQwZz09Meeting...
  • New PBC and Itch 2022 Survey

    New PBC and Itch 2022 Survey

    Posted: Jun 15th, 2022

    New PBC and Itch 2022 survey on our Mobile App  We have another opportunity to speak with a collective voice.  We can amplify your voice: but first we need you to tell us your story. Participate in our new PBC and Itch 2022...