Primary Sclerosing Cholangitis (PSC) is a rare and often misunderstood disease—not everyone gets it.
But we do!
We live it, we navigate its challenges, and we find strength in one another. Through the ups and downs, we share a bond that connects us in a way only those who truly understand PSC can feel.
Support For You & Your Family
PSC Partners Seeking a Cure provides support for PSC patients, families, and caregivers in many ways, including:
- Online support groups, including an open and closed Facebook page
- An annual patient and caregiver conference
- Guidelines to help you start your own local patient and caregiver support group, and more
Annual Conference
One of the best ways to get support is to attend our Annual Conference.
PSCP Online Facebook Groups
PSC Partners provides online support groups where you can ask questions and receive emotional support.
Remember that, even though PSC is rare, thousands of people around the world live with it. Our online support groups are appropriate for patients, caregivers, family members, and friends. They are hosted on Facebook, so you will need an account to access these resources.
Facebook: Closed (Private) Group
Other Online Support Groups
Before making any medical decisions, always check with your doctor.
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Atlanta Area
Contact: Fred Sabernick
Australia
PSC Support Australia (Closed Facebook Group)
Israel
Israel PSC Support (Facebook) Contact: Ellen and Chaim Boermeester or Sindee Weinbaum
New Zealand
New Zealand PSC Kiwi Support (Closed Facebook Group)
Norway
Norway PSC Support (Facebook)
San Francisco
California Pacific Medical Center (CPMC) Autoimmune Liver Disease Program sponsors free monthly support meetings. There is a dial-in option for those who wish to attend remotely.
Those living with PSC, PBC, and Autoimmune Hepatitis (AIH), family members, loved ones, and caregivers are invited to participate in this group to learn and share experiences with others. The purpose is to provide informational, emotional, and other forms of support in an open, accepting environment. Educational sessions will be provided based on topics of interest from the group.
To register, email cpmcAILD@sutterhealth.org.
United Kingdom
Established in 1995 in the United Kingdom, PSC Support is a patient organization dedicated to helping people affected by PSC. Its mission is to improve the lives of people with PSC and to work towards a future without PSC. PSC Support can be contacted at info@pscsupport.org.uk.
“PSC Support values our international links with PSC Partners Seeking a Cure, and we recognise that sharing information and collaborating together will strengthen our already strong patient voice. PSC knows no boundaries. Whenever we can work together to enhance the impact of our work rather than duplicate efforts, we will.”
Martine Walmsley, Chair of Trustees
Start a Local Support Group
Living with PSC is a difficult experience for everyone affected by this disease. Personal connections between and among PSCers and caregivers are valuable sources of support, and local support groups are one of the best ways to make these connections. If there isn't a support group in your area, we encourage you to start one! The support group can take whatever form you wish, from a casual get-together every few months to regular, structured meetings. The key is to make the support group your own by personalizing the gathering to suit everyone’s needs.
PSC Partners has developed a support group leader guide that provides ideas that may be helpful as you begin to think about starting your own support group.
View or download the Support Group Leader Guide.
It is important to note that PSC Partners Seeking a Cure does not endorse local support groups. PSC Partners Seeking a Cure accepts no responsibility for any information, activities, or costs associated with local support groups and does not intend to endorse such groups. Any information or advice provided in a local support group does not constitute medical or legal advice and should not be relied upon as such.
Before making any medical decisions, always check with your doctor.
