This PFIC Support Contact Directory is made possible by collaborative efforts amongst patients, affiliates and support organizations worldwide that provide resources for PFIC patients and families. We hope that through further collaboration, we will grow this list to be a robust resource for all.
Progressive Familial Intrahepatic Cholestasis (PFIC) is classified as an ultra-rare disease. It can be challenging to find the various types of support and resources needed to manage this complex diagnosis. The goal of the Global PFIC Support Contact Directory is to help ease the burden of making connections when it matters most.
If you would like your information added to this list or would like to make changes to your listing, please contact us!
Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases.
PFIC Contact Poland
Contact: Bernadetta Skora
Contact #1: Emily Ventura
Contact #2: Melissa Kochanowsky
The American Liver Foundation facilitates, advocates, and promotes education, support, and research for the prevention, treatment, and cure of liver disease.
Patient education information from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – an organization of more than 2600 pediatric gastroenterologists from all over North America.
NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases.