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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! 

  • Genfit - Clinical Trial for those with limited response to URSO

    Genfit - Clinical Trial for those with limited response to URSO

    Posted: Jan 30th, 2018

    Are you interested in being involved in a clinical trial in Primary Biliary Cholangitis?  We are holding an investigational study in PBC for patients who have not experienced an adequate response with Ursodeoxycholic Acid (UDCA...
  • GSK - Clinical Research Study into itch in PBC

    GSK - Clinical Research Study into itch in PBC

    Posted: Jan 30th, 2018

    GLIMMER - GSK 201000 Clinical Research Study in patients with itch due to Primary Biliary Cholangitis (PBC). The Study: GlaxoSmithKline (GSK) pharmaceuticals is running a study of a new treatment which we hope will improve itch for...
  • Genkyotex - Phase 2 Clinical Trial

    Genkyotex - Phase 2 Clinical Trial

    Posted: Jan 30th, 2018

    “Genkyotex Initiates Patient Enrolment into Phase 2 Clinical Trial in Primary Biliary Cholangitis”   Genkyotex has begun enrolling patients into the Company’s Phase 2 clinical trial of its NOX1 and NOX4 enzymes...
  • We Have Moved Office

    Posted: Jan 30th, 2018

    As reported in issue 80 of the Bear Facts magazine, the landlord of the York Place office served us with an eviction notice.  We have been working tirelessly over the last three weeks to move into our new office and we are delighted...