How Rural Students Are Changing the Conversation on Rare Liver Diseases

In honor of Rare Disease Week, The Educated Patient concludes its four-part series highlighting the voices of those living with rare liver diseases. Throughout this series, we’ve explored the challenges of diagnosis, treatment access and patient advocacy — especially in underserved regions. In this final installment, we spotlight the Global Liver Institute (GLI)’s Rare and Rural campaign, which is working to bridge the knowledge gap in rural communities by educating high school students about rare liver diseases.

Kristin Hatcher, program director of GLI, says they are aiming to create “liver allies” in communities that typically lack exposure to health care careers and medical knowledge. The program seeks to bridge this gap by engaging students in poster projects on rare liver diseases, which they will present to local stakeholders, including health care professionals and community leaders.

Cecilia Dueñas, Psy.D., founder of the PBC Research Foundation and advocate for patients with rare liver disease, involved in the program, highlights the misconceptions surrounding liver disease, particularly the assumption that it is always linked to alcohol use. One student she mentored was shocked to learn how the liver functions and that many people with liver diseases have never consumed alcohol. He shared this newfound knowledge with his family and community, sparking discussions that extended beyond the classroom. This grassroots education model creates a ripple effect, spreading awareness through families and social networks.

Hatcher also emphasizes the global variations in patient needs and access to resources. Through her work with international patient advocacy groups, she has observed that support systems differ widely depending on location. She stresses that individuals with rare liver diseases should connect with advocacy organizations that align with their specific geographic and medical needs. The overarching goal of GLI’s initiative is to empower young people with knowledge, foster community engagement and reshape public perceptions about liver disease — ultimately encouraging earlier diagnosis and better support systems for those affected.