What is PFIC?

Progressive Familial Intrahepatic Cholestasis (PFIC) is a group of rare genetic disorders that cause cholestatic liver disease and can lead to liver failure in early childhood. With more than 12 known genetic subtypes, PFIC affects an estimated 1 in 50,000–100,000 people worldwide. While most patients are diagnosed in infancy or early childhood, some subtypes may not present until early adulthood. There is currently no cure, and many patients require liver transplants to manage the progression of their disease.

Life with PFIC

One of the most debilitating features of PFIC is severe, relentless itching that disrupts sleep and daily life for patients and their families around the clock. Beyond the physical symptoms, families often struggle to access specialists familiar with the disease, navigate insurance coverage gaps, and cope with the emotional toll of an uncertain prognosis. No family should have to face that alone.

How PFIC Network Helps

PFIC Network was founded in 2018 by three mothers of PFIC patients who knew firsthand how isolating a rare disease diagnosis can be. Our mission is to improve the lives of patients and families worldwide through direct support, disease education, community connection, and funding research that will one day lead to a cure.

Stronger Together

When you support PFIC Network, you help provide care packages to newly diagnosed families, financial assistance to those facing crushing medical bills, and funding for the PFIC research that gives our community hope. Every contribution — no matter the size — makes a difference for families navigating one of the rarest and most challenging diseases in the world.

PFIC Network Community Fundraising 2026

Together, we can fight for a cure!

Team Members