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! 

  • Co. Antrim Charity Event in aid of the PBC Foundation

    Co. Antrim Charity Event in aid of the PBC Foundation

    Posted: Sep 20th, 2019

    Our member Yvonne Small and husband John are hosting a charity evening on Friday 4th October 2019  from 9pm-12 midnight. The event will be held at: The Diamond Bar 15-17 The Diamond Ahoghill Ballymena  Co Antrim BT42...
  • Join Us on International PBC Day 2019

    Join Us on International PBC Day 2019

    Posted: Sep 6th, 2019

    It’s International PBC Day this Sunday 8th September, and we have various events happening up and down the UK.  Why not pop along to your local event and help raise support in your area?  This is also an excellent opportunity...
  • Spotlight on Rare Diseases

    Spotlight on Rare Diseases

    Posted: Sep 4th, 2019

    Currently, there are between 6,000 and 8,000 rare diseases and it is estimated that 3.5 million people in the UK will be affected by a rare disease during their lives. Despite the scale of the issue, over 90% of know rare diseases...
  • Organ Donation Week

    Organ Donation Week

    Posted: Sep 3rd, 2019

    #organdonation week starts on Monday 02 September. Please help raise awareness by having conversations about the importance of organ donation and how it helps save lives. Have you thought about organ donation? Make sure you share your...