The Strength of Community for Patients with PSC in Underserved Areas

As part of our Rare Disease Week series, The Educated Patient is amplifying the voices of individuals living with rare liver diseases. This third installment in our four-part series highlights Sindee Weinbaum, a patient advocate and leader in the primary sclerosing cholangitis (PSC) community.

Weinbaum’s journey with PSC has been shaped by the power of peer support, advocacy and access to care, particularly in rural and underserved areas. Living in Israel, she has seen firsthand how geographic barriers impact access to specialized care. Many patients must travel long distances to reach hospitals, transplant centers or specialists. Through webinars, groups and in-person meetings, Sindee and other advocates ensure that no patient feels alone, offering guidance, medical insights and emotional support.

Weinbaum recalls how connecting with other patients with PSC shortly after her diagnosis was life-changing. One of the first things she learned was to seek out a doctor experienced in PSC, as expertise in rare diseases can significantly affect patient outcomes. She now passes on this advice to others, ensuring they feel empowered to advocate for themselves.

In collaboration with organizations like the Global Liver Institute (GLI) and its Rare and Rural campaign, Weinbaum is working to bridge the gaps in awareness, resources and access to care for those navigating PSC and other rare liver diseases. She emphasizes the importance of community-driven initiatives, such as support groups and online platforms, which provide real-time assistance and a safe space for patients to discuss their experiences.

Weinbaum also sheds light on misconceptions about PSC, including the stigma that liver disease is always linked to lifestyle choices. She highlights the invisible struggles of living with a chronic illness, such as fatigue and mobility challenges, which others may not recognize.

As an advocate, Weinbaum believes in breaking down barriers — whether they are geographic, systemic or social. Her message is clear: patients are stronger together, and by sharing knowledge and supporting one another, they can improve the lives of those living with PSC and other rare liver conditions.

Stay tuned for our final installment in this series, where we continue to spotlight the GLI’s advocacy efforts.