Regulatory decision-makers are listening to the PSC patient community. While clinical trials are actively studying potential new medicines, trial data alone is not enough. Help us fill in the gaps by explaining the burden of living with primary sclerosing cholangitis and how treatments could transform lives by completing our new survey.

Martine Brown, PSC Support Head of Research and Policy, is urging anyone affected by PSC to take the survey, saying, "Promising results from trials don't automatically get medicines approved, even for diseases with high unmet need like PSC.

"PSC will not be solved by one pharmaceutical company, one patient organisation, one country or even one research group. The whole PSC community must stand together to collectively share the reality of PSC and the urgent need for safe treatments that work.

"We, along with other PSC patient organisations are asking you to complete this survey so that we can present your experiences and views to decision-makers. Our goal is to get safe and effective treatments to everyone with PSC, as soon as possible, wherever they live."

Who can take the survey?

Participation is open globally to anyone aged 16 or over who:

• is living with PSC or a liver transplant; or

• knows someone with PSC; or

• has lost a loved one to PSC

How your response makes a difference

By sharing your experiences, you directly inform medicines regulators such as the MHRA in the UK, the FDA in the US, and the PBAC in Australia.

Anonymous quotes and collective responses demonstrate the day-to-day reality of PSC, ensuring patient voices directly shape future approval decisions.

How was the survey created?

PSC Support joined forces with PSC Partners Seeking a Cure, PSC Partners Seeking a Cure Canada, PSC Support Australia and the Croatian Rare Liver Foundation to create this important survey. We are very grateful to the people affected by PSC helped test the survey and create the questions - thank you.

Important details and confidentiality

• Time to complete: Approximately 15–20 minutes.

• Privacy: Responses are completely anonymous, with no personally identifiable data collected.

• Sensitive content: Questions address serious complications, uncertainty, and difficult experiences. Support information is provided at the end of the survey.

Please spread the word

Please share the survey and encourage anyone you know affected by PSC to take part.