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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! 

  • Annual raffle 2019

    Annual raffle 2019

    Posted: Nov 25th, 2019

    Our sincere thanks to everyone who participated in our Annual raffle this year. Congratulations to our prize winners who are: 1st prize: Christine Prior, Suffolk 2nd prize: Christine Swanston, Lincolnshire 3rd prize:...
  • Flu Vaccination

    Flu Vaccination

    Posted: Nov 6th, 2019

    It is that time of year again when we receive enquiries about whether or not one should have the vaccination against ‘flu.  Professor James Neuberger of Queen Elizabeth Hospital, Birmingham provides some information...
  • AASLD Guidance for PBC

    AASLD Guidance for PBC

    Posted: Nov 6th, 2019

    We are delighted to share with you our brand new Lay Guidance based upon the AASLD Guidance for PBC.  Knowing how powerful the EASL lay document has been, we were delighted when we were asked by PBC patients in the US to do a...