Advocating for Rural Patients with Rare Diseases, with Cecilia Dueñas, Psy.D.

In honor of Rare Disease Week, The Educated Patient is amplifying the voices of those living with rare liver diseases. The Global Liver Institute (GLI) is committed to raising awareness and advocating for patients with rare liver diseases, particularly those in underserved and isolated communities. In 2025, GLI’s campaign Rare and Rural focuses on capturing the lived experiences of individuals navigating rare liver conditions in rural settings. The goal is to fuel curiosity, inspire action and support meaningful research efforts to address the unique barriers these patients face.

In an interview with The Educated Patient, Cecilia Dueñas, Psy.D., founder of the PBC Research Foundation and advocate for patients with rare liver disease, shares her personal and professional insights into the challenges faced by individuals living with primary biliary cholangitis (PBC) in rural communities. Having experienced firsthand the difficulty of finding the right health care providers, she understands the barriers that rural patients face — barriers that extend past physical distance to include financial burdens, lack of specialist knowledge and isolation.

Dueñas recounted how for seven years she followed medical advice without question, only to realize she needed a care team that truly understood her needs. She was fortunate to have access to diverse and knowledgeable providers in an urban setting, but her advocacy work soon made her aware of the stark contrast for rural patients. Many individuals with PBC and other rare liver diseases live in areas with only a handful of specialists, if any at all, forcing them to travel long distances or skip specialized care entirely.

Beyond access to medical care, Dueñas highlights the emotional challenges of living with a rare disease in isolation. She shares that it took years before she met another patient with PBC in person, and that meeting only happened through a GLI event. This sense of invisibility contributes to high rates of anxiety and depression among patients with rare liver disease — an issue that is three times more prevalent than in the general population.

She stresses the importance of community support, encouraging patients to seek out advocacy organizations and broader liver disease networks rather than limiting themselves to condition-specific groups. Expanding one’s support network can provide a sense of belonging, shared understanding and much-needed emotional support.