Support

As a chronic and progressive liver disease, primary sclerosing cholangitis (PSC) can have a profound impact on patients as well as their caregivers and families. Dealing with PSC often requires more than just medical care. There may be physical, emotional, and day-to-day lifestyle challenges. A strong support system can help those affected by PSC navigate the complexities living with PSC.

Getting support starts with connecting with those who know what you are going through. PSC Partners in Canada and the United States offer various ways to engage with others or simply listen to conversations about PSC.

Join a Facebook group

PSC Partners provides two online support groups on Facebook: an open public group; and a closed private group for those who want more privacy if discussing their health. Both groups allow you to ask questions and connect with others who understand the unique challenges of PSC firsthand. Many people impacted by PSC find that these online forums give them a sense of belonging and hope. The Facebook support groups are moderated by PSC Partners staff with the intention to minimize misinformation and keep these groups a safe and supportive space for the PSC community.

If you have a Facebook account, you can join our Open Group, Closed (Private) Group, or both!

Don’t forget to follow PSC Partners Canada on Facebook to stay up-to-date on PSC news and events.

Request a mentor (or volunteer to be one)

PSC can be overwhelming to manage and sometimes a deeper level of support is needed. PSC Partners offers a mentor program for these situations. Whether you’re a PSC patient, parent, spouse, caregiver, or another member of the PSC community, a mentor can be a great source of support and information.

Interested in becoming a mentor? PSC Partners Canada is looking for people who have been through the PSC journey or are further along and want to help others. Mentorship is about providing support, not medical advice. Shared experiences can help reduce the feeling of fear and isolation that newly diagnosed PSC patients and their families go through.

To request a mentor or volunteer to be one, complete the mentorship form. Please note that people in the PSC community must be at least 13 years old to request a mentor.

We make every effort to match mentees with mentors from their peer group, and, if possible, close geographical location. Therefore, not everyone who applies will be matched immediately. Please be patient as our Volunteer Mentor Program Coordinator works to make this program beneficial for everyone.

If you have any questions, please send them to [email protected].

Sign up for a ZoomRoom

For those who prefer to put a face to a name, PSC Partners hosts monthly PSC peer group meetings on Zoom. These virtual sessions bring people from the PSC community together for supportive, helpful, and fun discussions. The events are not recorded to respect the participants’ privacy and to encourage meaningful conversations.

ZoomRoom meetings cover different peer groups to better address their concerns. The current groups are:

Teens living with PSC & post-transplant (ages 13 – 18)
Adults living with PSC &/or post-transplant
Caregivers in the PSC Community including parents and spouses
Living with loss and carrying on the spirit. These sessions are intended for those who have lost a loved one to PSC.

Upcoming ZoomRooms are posted on the News and Events page . Simply click on the ZoomRoom that interests you and register online.

Attend an event

PSC Partners Canada hosts formal and informal events a few times per year. The events are a great way for patients and caregivers to meet up in person with others impacted by PSC. Some events provide learning opportunities and a chance to hear from Canadian doctors and researchers focused on treating or finding a cure for PSC.

PSC Partners hosts an Annual Conference in the United States which has been running for 20 years. The conference is typically three days long and includes educational sessions from PSC experts, peer-to-peer support group meetings, social get-togethers, and more.

To be notified of upcoming events, sign up for the quarterly Loon Duct newsletter from PSC Partners Canada and check the News and Events page.