PBC Foundation

PBC Foundation The PBC Foundation is the only UK organisation dedicated to providing support and information to those affected by Primary Biliary Cholangitis (PBC).

The PBC Foundation is a UK-based organisation dedicated to providing support and information to those around the world affected by Primary Biliary Cholangitis (PBC).

Join us for a chat at a Community Café meeting.Hosted by PBC Foundation volunteers, community cafés aim to break isolati...
01/03/2026

Join us for a chat at a Community Café meeting.

Hosted by PBC Foundation volunteers, community cafés aim to break isolation by bringing the community together, helping people feel less alone, and sharing information about the services available through the PBC Foundation.

Here are the Community Café meetings coming up over the next week:

☕ Wednesday 04 March: Wiltshire Community Café (in person) | 10am - 12pm UK time

☕ Wednesday 04 March: US Online Community Café | 8am PT | 9am MT | 10am CT | 11am CT

☕Saturday 07 March: Essex Community Café (in person) | 10am - 12pm UK time

Log-in is required to ensure the meetings are kept as safe spaces. If you are already registered with the Foundation, click on the event entry on our Events webpage for more information about the meetings and for links to the online meetings. If you are new to the Foundation, you can also use the links to register with us for free. You will also need to complete a short Community Café Registration Form.

Visit our Events webpage for more information: https://www.pbcfoundation.org.uk/events/

** We are featuring in Rare Revolution Magazine's Rare Disease Day takeover event! **Don't forget that we have a series ...
28/02/2026

** We are featuring in Rare Revolution Magazine's Rare Disease Day takeover event! **

Don't forget that we have a series of posts about PBC and the PBC Foundation being shared on Rare Revolution Magazine's Facebook and Instagram platforms between 5pm and 6pm UK time this evening!

This is an incredible opportunity to raise awareness among new audiences and to reach more people than ever before on Rare Disease Day.

Please support this opportunity by reading, sharing, commenting on, and reacting to this series of posts.
Rare Revolution Magazine page: https://www.facebook.com/RareRevolutionMagazine
Rare Revolution Magazine Instagram page: https://www.instagram.com/rarerevolutionmagazine/

Rare Revolution Magazine is a digital magazine giving a voice to those affected by rare conditions and charities that support them.

** ITCH IN PBC SURVEY CLOSES MONDAY 02 MARCH **The Itch in PBC survey (created in collaboration with Gilead) closes on M...
28/02/2026

** ITCH IN PBC SURVEY CLOSES MONDAY 02 MARCH **

The Itch in PBC survey (created in collaboration with Gilead) closes on Monday 02 March; please share your experience and add your voice to this survey. The survey is available in the PBC Foundation app and via the PBC Foundation website.

This survey is being carried out to better understand the experiences of people living with Primary Biliary Cholangitis (PBC), especially those who experience itching (pruritus). We want to learn how this symptom affects your day‑to‑day life and overall wellbeing but even if you don’t have itch please take part!

For more information including how to access the survey and how to download the PBC Foundation app, follow this link to our News article about the survey: https://www.pbcfoundation.international/new-survey-available-itch-in-pbc/

Here are some words from Rebecca West, Head of Research & Education at the PBC Foundation, about the impact of taking part in surveys:
"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."

28/02/2026

On Rare Disease Day we are sharing a message from Robert Mitchell-Thain, CEO of the PBC Foundation.

This Rare Disease Day we are inviting you to highlight 3 rare conditions or 3 organisations supporting rare conditions - watch the video for more information and comment below ⬇️

** We are featuring in Rare Revolution Magazine's Rare Disease Day takeover event! **This Rare Disease Day we have a ser...
28/02/2026

** We are featuring in Rare Revolution Magazine's Rare Disease Day takeover event! **

This Rare Disease Day we have a series of posts about PBC and the PBC Foundation that will be shared on Rare Revolution Magazine's Facebook and Instagram platforms between 5pm and 6pm UK time this evening.

This is an incredible opportunity to raise awareness among new audiences and to reach more people than ever before on Rare Disease Day.

Please support this opportunity by reading, sharing, commenting on, and reacting to this series of posts.
Rare Revolution Magazine page: https://www.facebook.com/RareRevolutionMagazine
Rare Revolution Magazine Instagram page: https://www.instagram.com/rarerevolutionmagazine/

Rare Revolution Magazine is a digital magazine giving a voice to those affected by rare conditions and charities that support them.

💜 We are launching a new campaign to celebrate 30 years of the PBC Foundation! 💜'30 for 30' is a new campaign to support...
28/02/2026

💜 We are launching a new campaign to celebrate 30 years of the PBC Foundation! 💜

'30 for 30' is a new campaign to support fundraising and awareness raising as we celebrate 30 years of the PBC Foundation.

How you can get involved:
This is an excellent opportunity to think outside the box and get involved to celebrate the Foundation and the last 30 Years.

You could walk for 30 days, swim 30 lengths, host 30 coffee mornings, repost, react to, or comment on social media posts 30 times – any ideas welcome as long as it includes the number 30. This could be anything from raising awareness to Fundraising events and activities.

We are also inviting you to share your experience and perception of changes at the PBC Foundation over the last 30 years as part of the '30 for 30' campaign - email info@pbcfoundation.international.

Let's all get involved, have some fun, and celebrate all things PBC Foundation!

Updates and news about this campaign will be shared through our '30 for 30' webpage: https://www.pbcfoundation.international/30for30/

** No Q&A this week **Please be aware that there will be no Q&A tomorrow, Thursday 26 February.The Q&A will return next ...
25/02/2026

** No Q&A this week **

Please be aware that there will be no Q&A tomorrow, Thursday 26 February.

The Q&A will return next week when Dr Robert Gish will be answering your PBC questions. If you would like to submit a question for the next Q&A, please use the contact form on our website: https://www.pbcfoundation.org.uk/contact-us/

In the meantime, our YouTube channel is available where we have an extensive collection of videos, including previous Q&As, patients' stories, and other videos: https://www.youtube.com/pbcfoundation

Please remember that these Q&As do not take the place of a consultation with your own clinician – we aim to provide general medical information and not medical advice in these sessions . We will generalise your questions to support that, if you need help with a more detailed issue, please contact us on the helpline +44 (0)131 556 6811.

Our latest vlog is here!View the latest vlog via this link: https://youtube.com/shorts/sG0uOruIFD8?feature=shareFurther ...
25/02/2026

Our latest vlog is here!

View the latest vlog via this link: https://youtube.com/shorts/sG0uOruIFD8?feature=share

Further links are provided below if there is anything mentioned in the video that you would like to get involved in, or if you would like more information about any of the topics:

🟣 '30 for 30' campaign to support fundraising and awareness raising as we celebrate 30 years of the PBC Foundation - look out for information on our social media platforms on Saturday (Rare Disease Day) and in our next issue of the Bear Facts magazine.

🟣 If you would like to share your experience and perception of changes at the PBC Foundation as part of the '30 for 30' campaign: info@pbcfoundation.international

🟣 Save the date for the Patient Conference: Saturday 12 and Sunday 13 September in Edinburgh. Look out for further information in the coming weeks.

🟣 Surveys:
For general information about surveys: https://www.pbcfoundation.international/research-hub/surveys/.
To access current surveys via our website, log into your account, visit your account page, and click on Available Surveys: https://www.pbcfoundation.international/members/surveys/ -surveys
Surveys can also be accessed using the PBC Foundation app and the app can be downloaded using the following 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

** NEW SURVEY **We are excited to announce that, in collaboration with Gilead, a new survey is available in the PBC Foun...
25/02/2026

** NEW SURVEY **

We are excited to announce that, in collaboration with Gilead, a new survey is available in the PBC Foundation app and via the PBC Foundation website: Itch in PBC.

This survey is being carried out to better understand the experiences of people living with Primary Biliary Cholangitis (PBC), especially those who experience itching (pruritus). We want to learn how this symptom affects your day‑to‑day life and overall wellbeing but even if you don’t have itch please take part!

For more information including how to access the survey and how to download the PBC Foundation app, follow this link to our News article about the survey: https://www.pbcfoundation.international/new-survey-available-itch-in-pbc/

Here are some words from Rebecca West, Head of Research & Education at the PBC Foundation, about the impact of taking part in surveys:
"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."

Our next Transplant Journey online meeting is tomorrow, Thursday 26 February at 6pm UK time.Research and experience show...
25/02/2026

Our next Transplant Journey online meeting is tomorrow, Thursday 26 February at 6pm UK time.

Research and experience show that when patients - and their loved ones - meet someone who has successfully gone through a liver transplant, see how well they're doing years later, and have the opportunity to ask questions about the process, it can be both informative and deeply reassuring.

Login is required to keep this a safe space. If you are already registered with the Foundation, click the link below for information about how to join. If you are new to the Foundation, you can also use this link to register with us for free: https://www.pbcfoundation.international/members/login-register/?redirect=16071

Please email Mo mo@pbcfoundation.international if you would like more information or have any questions about these sessions.

Address

Unit 1, Dunfermline Business Centre, Izatt Avenue
Edinburgh
KY11 3BZ

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 4:30pm

Telephone

+441315566811

Website

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