We are excited to announce that, in collaboration with Umecrine Cognition, a new survey is now available in the PBC Foundation app and on the PBC Foundation website: Fatigue in PBC.

This is the first survey about fatigue in PBC, and your feedback is extremely important to us as it offers vital information of your experience with your PBC symptoms and identifies the most pressing unmet needs.

Fatigue is one of the main symptoms of PBC that can have a significant impact on quality of life.  The PBC Foundation has a proud history of using the patient experience to improve the patient experience. We intend to use your collected, anonymised answers to campaign for better care in PBC fatigue. We can only do this when you share your experience and your knowledge. For that, we are grateful.


Here’s what Rebecca West, Head of Research & Education at the PBC Foundation, says about the survey:

“Patients living with PBC have a powerful voice. By taking part in research studies and patient surveys, you help scientists and clinicians better understand the disease, develop improved treatments, and shape care around real patient needs. Your experience matters—engaging in research today can lead to better outcomes for the entire PBC community tomorrow.”


Accessing the Survey
The survey can be accessed via the PBC Foundation app (links included below to download the app) or via the PBC Foundation website.  Please note that you must be logged in to your account to access the survey via the website.

To access the survey via the website, once logged in, go to your account page by clicking on your name to the top right of the page:

Then select ‘Available Surveys’ from the menu on the left:

To access the survey via the app, select ‘Surveys’ from the main Home page:

Download the app:
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


Register for free with the PBC Foundation
Registration can be completed by following this link.


If you need support
Please contact us if you have any problems registering with the Foundation, accessing the website, or downloading or accessing the app either by email at  info@pbcfoundation.international  or by phone on +44 (0)131 556 6811.