Ways to share your experience or get involved in raising awareness

Many people living with PBC tell us they want to help raise awareness or share their experiences.

There is no single “right” way to get involved.  Some people are happy to speak publicly, others prefer to contribute quietly behind the scenes, and some may want to take part one day, but not right now.  All these choices are valid.

When sharing your story, you are always in control and you can choose how much to share, as well as how and where your experience is used.

Hearing directly from people we support makes a real difference it helps others feel less alone, builds understanding, and strengthens our whole community.

We’re incredibly grateful to everyone who is willing to speak up and share their experiences.  Your honesty and courage not only inspire others, but also helps us grow and shape our work, guided by the people who matter most – people living with PBC.

Below are some current opportunities and this page will be updated as new opportunities arise.

Opportunity 1 – Share your experience through video

We’re working with the physiotherapy team at University Hospitals Birmingham and Ipsen to produce a series of awareness videos. You may have met the wonderful physiotherapy team from Birmingham at our patient conference in 2024. 

The videos will focus on

• Helping people living with PBC understand common symptoms, including fatigue, and the importance of monitoring and discussing symptoms
• Sharing simple, practical advice for managing fatigue day to day
• Exploring the emotional impact of PBC and empowering people to take ownership of their health
• Highlighting the support services available for people affected by PBC

Please note that you will be required to travel to Birmingham for this opportunity and the first provisional recording date is 20 March.  Ipsen will reimburse you for the time spent recording the videos along with reasonable travel expenses.

Opportunity 2 – Share your story through conversation

We’re working with the Roger Williams Institute Foundation for Liver Research to raise awareness of PBC.

They are looking to share patient stories that show what living with liver disease is really like, and how research can lead to earlier diagnosis, better treatment and better outcomes.

If you would be open to talking about your experience for a short case study, your voice would help researchers, funders and the public better understand the real impact of liver disease. 

You can find out more about their Foundation here: Foundation for Liver Research

This opportunity involves a relaxed phone or on-line conversation.  From this conversation, a written case study will be created for you.  You won’t be asked to write anything yourself, and the draft will be shared with you for approval before being used.

The case study would be shared on both their website and ours, you will have full control over what is shared. 

To register please complete this short form
Share your experience or get involved in raising awareness – Fill in form

There is no obligation to take part in these or other opportunities – registering simply lets us know you might be open to it.