PSC is a rare autoimmune disease of the bile ducts, with, sadly, no known cure. Getting a diagnosis can be devastating, not only for the sufferer, but also for those around them: parents, relatives, partners and friends.
However you’re affected by PSC, we’re here to help. Up to date information and support is only a click or phone call away. This rare, poorly understood disease can cause people to feel lonely and isolated. With our online communities and PSC Connect, we enable you to find other PSCers near you no matter where you are in the world, and to interact with others who understand.
We believe high quality information about PSC should be freely available and accessible to all, and you will not be charged for joining our community and using our services. Visitors to our website come from all over the world, and can read our information in their native language. The medical information on this site has been reviewed by our expert medical trustees and we have regular contributions from our medical advisers, all of whom are respected world authorities on PSC including Dr Roger Chapman, Professor David Adams, Dr Gideon Hirschfield, Dr Simon Rushbrook, Dr Douglas Thorburn, Dr James Ferguson and Dr Steve Periera.
We support our medical information with real life stories and experiences from PSCers. What it is really like to live with PSC? We are indebted to the many PSCers, some of whom have had PSC for thirty or more years, for sharing their tips and experiences about living with PSC. Our mantra, 'Don't let PSC stop you!' has never been more true.
We believe that anyone with PSC should receive their clinical care from a clinician with a specific interest in PSC. PSC is a complicated unpredictable disease, and it is important to be confident you are in experienced hands. We advocate for PSC patients and are involved in developing the UK’s own PSC guidelines for clinical care, as well as having a key involvement in the development of UK liver transplant policy.
We are working hard to find a cure or treatment for PSC. As well as directly funding and commissioning specific PSC research, we have close ties with UK-PSC and leading international PSC researchers, and we sit on the UK-PSC steering committee. These close ties have benefited PSC patients for over twenty years at our regular national PSC meetings when leading clinicians freely give up their time to talk to patients about the latest research developments and answer questions directly from patients. Our patient community is highly engaged with our work and we are able to communicate directly to researchers just how our unmet needs affect patients and where research priorities should lie.
We will not stop until a cure or treatment is found.