What is it?
Primary sclerosing cholangitis (PSC) is a rare and incurable chronic liver condition that causes scarring in the bile ducts and can lead to liver failure and the need for transplantation.
Global PSC Awareness Day is an initiative started by the European Liver Patients’ Association, which seeks to raise awareness of the condition and help find a cure.
The initiative involves PSC patient associations from all over the world, including Australia, the US, Canada and many European countries. These groups hold regular meetings to share and discuss their respective work on addressing the unmet needs of people living with PSC, and to prepare for the annual awareness day.
Each year, Global PSC Awareness Day involves a series of webinars that centre around a theme. This gives people all over the world an opportunity to hear from leading healthcare professionals, researchers and patient organisations, and to learn about the latest PSC developments.
What can we learn from this case study?
This excellent work demonstrates that it is possible to create and foster a global community around a shared goal. By working together, learning lessons from each other and sharing expertise, the PSC community is maximising the chances of achieving its ambition of stopping the progression of PSC and finding a cure.
