Living with PSC Patient Support Community is a dedicated patient-to-patient support community for families affected by Primary sclerosing cholangitis (PSC). Living with PSC Patient Support Community is powered by BensFriends.org, a network of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with PSC.
Why Community Matters When Living with PSC
Living with Primary Sclerosing Cholangitis (PSC) can feel overwhelming. This rare liver disease, which affects the bile ducts and can lead to serious complications, often brings more questions than answers. Because PSC is not widely understood—even among healthcare professionals—patients may feel isolated or uncertain about what the future holds. The …
Find Support. Share Hope. Live Better with PSC.
LivingWithPSC.org is a free, supportive online community for people living with Primary Sclerosing Cholangitis (PSC) and their caregivers. Connect with others who understand, share your experiences, find trusted information, and get the encouragement you need on your PSC journey.
Who can join Living with PSC?
Anyone with or affected by Primary Sclerosing Cholangitis (PSC), including patients and their family members, caregivers, and those experiencing loss due to PSC, can join the patient support LivingwithPSC.org. These communities offer a safe space for people of all backgrounds to share experiences, information, and mutual support regarding the challenges …
What is PSC?
Primary Sclerosing Cholangitis (PSC) is a rare, chronic liver disease that affects the bile ducts, causing inflammation and scarring that can lead to serious liver damage over time. People with PSC may experience fatigue, itching, abdominal pain, or no symptoms at all in early stages. It often occurs alongside inflammatory …
Ask Questions and Start Your Own Topics
Reading posts can be helpful, but creating an account lets you share your own experiences and questions. You can start new topics and receive responses tailored to your situation. It’s a great way to feel heard, get advice, and help others going through similar challenges. Your voice matters—join the conversation …
Join the Conversation
Found a post that speaks to you? With an account, you can leave comments, offer encouragement, or share your own insights. Engaging with others helps build a supportive environment where everyone feels seen. By joining the conversation, you become an important part of the community. Don’t just read—connect and be …
Learn More About Other Members
Creating an account allows you to view member profiles and learn more about their background. You can see if someone is a patient or caregiver, where they’re from, and details about their sleep condition. This helps you find relatable stories and people. It adds a layer of connection you can’t …
Find People Like You
Looking for others with similar experiences? Member profiles help you discover people with the same condition or from your area. This can lead to more meaningful conversations and stronger support. Creating an account gives you tools to filter and find those connections. You’re not alone—find someone out there truly understands …
Send Private Messages
Sometimes you need a one-on-one conversation. With an account, you can send private messages to other members or moderators when you want to talk more personally. Whether it’s sharing something sensitive or asking a private question, messaging lets you connect in a deeper way. It’s your space to reach out …