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 this contact directory is to help ease the burden of making connections when it matters most.
This directory is made possible by collaborative efforts amongst ambassadors, 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.
If you would like your information added to this list or would like to make changes to your listing, please use our contact details request form to send us your contact information.
Contact #1: Melanie Karakaidos
facebook page: https://www.facebook.com/groups/453930091419767
PFIC Contact Poland
Contact: Bernadetta Skora
contact #1: Emily Ventura
contact #2: Tara Kearns