Ways to get involved
We are working hard to find a cure or treatment for PSC, as well as directly funding and commissioning specific PSC research and supporting patients and their families.
We cannot do any of this without our amazing volunteers and fundraisers.
Be part of the solution
'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 helping PSC Support because their work is always interesting and the team are so friendly and supportive. Helping them is my way of dealing with PSC - I know I'm making a difference.'
Join a PSC Patient Panel
We are passionate about ensuring the work we do and research we support is centred around the needs and wishes of people affected by PSC.
We are often looking for volunteers with experience of living with PSC to join small panels ('Patient Panels') to share their views to:
- help us choose the right projects for PSC Support to pioneer and fund
- help us explain research results to ordinary people who don't have scientific knowledge
- help researchers with their research plans
- improve and develop our information and publications about PSC
'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 help.'
If you are someone with PSC, or a close family member of someone with PSC, and you are interested in joining one of these Patient Panels, please complete the form below.
Take a survey
We're working hard to help researchers find an effective treatment for PSC as soon as possible, and to help improve healthcare services for people with PSC.
We occasionally run surveys to find out your views on various topics, from your experiences of PSC, your healthcare to your views and appetite for research. Why? We MUST back up the claims we make about the needs of people with PSC with evidence. Your views are helping us do that. Together, we can make a difference.