This year, PFIC Network is raising $50,000 by October 5 to build a research program centered on the patient voice and collaboration in research. By doing so, we will improve care and treatment outcomes for PFIC by strengthening relationships with expert researchers at our annual Family & Scientific Conference, growing our patient registry into a valuable research tool, and directly funding research that is meaningful to our community. The $10,000 peer-to-peer goal achieved here will contribute to this mission!

Progressive familial intrahepatic cholestasis (PFIC) is a group of rare genetic disorders that can lead to liver failure during childhood. While the exact prevalence is unknown,  PFIC is estimated to affect 1 in 50,000-100,000 people worldwide. While great progress has been made in PFIC research over the last few decades, many questions about the biology and standards of care for PFIC remain unanswered.  As a result, patients and families are faced  every day with the horrible uncertainty of not knowing how and when the disease will progress and what their “best next steps” are for treatment and intervention.  

A crucial way we can alleviate this uncertainty is by incorporating the patient voice into healthcare and research. We need to understand and establish the values and priorities of PFIC patients and families so that we can help patients make more  informed healthcare decisions and stimulate research that is truly meaningful to our community!