Get involved
There are many ways to support PSC Support and help improve the lives of people affected by PSC. Whether you share your experience, support research, help raise awareness, volunteer, fundraise or donate, your involvement makes a real difference. If you're a researcher, request research support here.
Join our PSC Patient Panel Pool
We are passionate about making sure the work we do and the research we support reflect the needs, priorities and experiences of people affected by PSC.
Our Patient Panel Pool is a group of people living with PSC, and close family members, who are interested in sharing their views to help shape research and other PSC Support activities.
From time to time, we invite people from the pool to join small patient panels or take part in other involvement opportunities.
How you could help
You might be invited to:
- comment on research plans and study materials
- help researchers make their studies more relevant and practical
- help us decide which research projects to support
- help us explain research in clear, accessible language
- improve our information, publications and other resources
What joining the pool means
Joining the Patient Panel Pool means:
- you are expressing an interest in future opportunities
- we may contact you when a suitable activity comes up
- you can decide each time whether or not to take part
- you are not committing to every opportunity
Some activities may involve a short feedback task by email, reviewing a document, or joining a small online discussion or meeting.
You do not need any research experience. Your lived experience and perspective are what matter.
“I wanted to help but was worried about over-committing myself. Being on the patient panel is perfect because I can pick which projects I want to get involved with and when.”
“I love being involved! I've helped improve the design of a research study just by giving my point of view as a patient.”
“My partner has PSC. Being involved helps me because it is reassuring to see how much is going on to make things better for PSC patients. I didn't realise how much advocacy and research work PSC Support does behind the scenes and I’m delighted to help.”
Join a PSC Patient Panel
If you are someone living with PSC, or a close family member of someone with PSC, and would like to hear about future patient panel opportunities, please complete the form below.
If you do not see a form here, please enable cookies for our website using the ‘lock’ icon in the bottom left of the page.
Other ways to help
Raise awareness
Help more people understand PSC by following us on social media, sharing our posts, and helping spread the word.
- Like our Facebook Page
- Join our Facebook Group
- Follow us on X
- Follow us on Instagram
- Follow us on LinkedIn
- Follow us on TikTok
- Follow us on YouTube
Share your story
Sharing your story can help others feel less alone, raise awareness of PSC, and show why support and research matter.
Take a survey
Our surveys help us understand what matters most to people affected by PSC, strengthen our advocacy, and support better research and services.
Volunteer
If you would like to give your time and skills to support our work, we would love to hear from you.
Fundraise
Fundraising helps us support people affected by PSC and invest in the work needed to drive progress.
Donate
Your donation helps us continue to provide support, fund vital work, and push for better understanding, treatment and care for people affected by PSC.
However you choose to get involved, you can help make a real difference for people affected by PSC.