REPORT COMING SOON
A multinational survey initiated by PSC Support, in collaboration with PSC Partners Seeking a Cure, PSC Partners Seeking a Cure Canada, PSC Support Australia and the Croatian Rare Liver Foundation capturing the needs of people living with PSC received 1,107 responses from 811 patients and 296 caregivers in just two weeks (22 Sep to 6 Oct 2026). The survey was conducted in English as an online survey and distributed by the patient organisations' communication channels and social media.
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. This survey was designed to fill in the gaps by understanding the burden of living with primary sclerosing cholangitis and how treatments could transform lives.
Martine Brown, PSC Support Co-CEO /Head of Research and Policy, said, "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.
"... Our goal is to get safe and effective treatments to everyone with PSC, as soon as possible, wherever they live."
Date updated: 5 November 2026