PSC is a rare disease and not everyone “gets it.” Part of the mission of PSC Partners Seeking a Cure is to provide support to PSC patients, families and caregivers. We provide support with in-person meetings and online support groups. We also provide a toolkit with guidelines on starting your own local patient and caregiver support group.
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One of the best ways to get support is to attend one of our Annual Conferences. Follow the link and we’ll look to see you at a future 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, there are thousands of people around the world who live with PSC. Our online groups are appropriate for patients, caregivers, family members, friends, or other interested parties.
Our online support groups are hosted on Facebook and you will need an account to access these resources.
Other Online Support Groups
Yahoo Groups - Facebook Version
Local Support Groups
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. As a general description, the Merriam-Webster Dictionary defines a support group as, “a group of people with common experiences and concerns who provide emotional and moral support for one another.” If you would like a local support group in your area, we encourage you to start one! The support group can take whatever form you wish: it can range 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 group 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. Feel free to follow whatever approach best works for you and your group.
View or download the Support Group Leader Guide .
It is important to note that local support groups are not endorsed by PSC Partners Seeking a Cure. PSC Partners Seeking a Cure accepts no responsibility for any information, activities or costs associated with local support groups, nor is PSC Partners intending to provide an endorsement of such group. 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.