This site is no longer maintained or updated. However the site and information will remain.
For further information please go to pscsupport.org.au
Thank you for your support of this site over the years since our son was first diagnosed with PSC.
The story behind PSC Australia
Many people newly diagnosed with primary sclerosing cholangitis, more commonly known as PSC, will turn to the internet to search for information regarding their diagnosis, particularly as PSC is a rare disease. While much information can be found on the internet, the web can quite often be a difficult and daunting space to navigate, particularly when attempting to source the most relevant information about a rare disease. Much of the content found on PSC using a 'google' or 'Dr Google' search can be disheartening, frightening, impersonal and possibly out of date.
This site is a portal; a place where information is gathered and distributed. It is for non-commercial purposes only. It aspires to meet the needs of those newly diagnosed with PSC, their family, friends and/or caregivers, by presenting relevant and up-to-date information about PSC and related medical problems, such as inflammatory bowel disease, and provide links to access further information. It also aims to cater for those who have been living with PSC for quite some time by presenting new and updated information. There are links to Australian sites as well as the latest research on PSC. Reputable international organisations with information on PSC have long been established, and links to these are provided.
As as newly diagnosed person, a family member or a caregiver, support is crucial, and there are a number of support groups currently online providing much needed support and practical advice, particularly from a personal perspective. As a person living with such a challenging and changing disease, relevant and current information is vital. This site is intended to complement support groups, to be a 'knowledge base' and trustworthy information source, however it is not meant to replace information and advice provided by your own medical team. With the wealth of personal experience available online and accessible, as well as support groups, and up-to-date information, there is no need to feel alone.
This site is a portal; a place where information is gathered and distributed. It is for non-commercial purposes only. It aspires to meet the needs of those newly diagnosed with PSC, their family, friends and/or caregivers, by presenting relevant and up-to-date information about PSC and related medical problems, such as inflammatory bowel disease, and provide links to access further information. It also aims to cater for those who have been living with PSC for quite some time by presenting new and updated information. There are links to Australian sites as well as the latest research on PSC. Reputable international organisations with information on PSC have long been established, and links to these are provided.
As as newly diagnosed person, a family member or a caregiver, support is crucial, and there are a number of support groups currently online providing much needed support and practical advice, particularly from a personal perspective. As a person living with such a challenging and changing disease, relevant and current information is vital. This site is intended to complement support groups, to be a 'knowledge base' and trustworthy information source, however it is not meant to replace information and advice provided by your own medical team. With the wealth of personal experience available online and accessible, as well as support groups, and up-to-date information, there is no need to feel alone.
Facebook support groups
Facebook PSC support group (closed group): PSC Support Australia
Facebook PSC support group for young adults with PSC: PSC-Support Young Adults Primary Sclerosing Cholangitis Support Group
Facebook PSC support group (closed group): PSC Support Australia
Facebook PSC support group for young adults with PSC: PSC-Support Young Adults Primary Sclerosing Cholangitis Support Group