Latest News
Share this page

Latest News

This latest news is all about the App and your opportunity to get involved!!

 

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! 

  • Webinars are go!

    Webinars are go!

    Posted: Mar 15th, 2017

    Our series of Webinars are underway, but it isn't too late to join in. Previous webinar recordings are available in the videos page of our Members' section   Friday 17th March, 3pm GMT: Relaxation Techniques This webinar is exactly...
  • Obeticholic acid approved by NICE for the treatment of patients with PBC

    Obeticholic acid approved by NICE for the treatment of patients with PBC

    Posted: Mar 2nd, 2017

    First new medication for Primary Biliary Cholangitis in nearly 20 years   The PBC Foundation today welcomes the news that the first new treatment for 20 years has become available for patients with PBC. Affecting 22,000 patients...