Global Support Contact Directory

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.

Australia

Contact #1: Melanie Karakaidos
email: melanie@pfic.org
facebook page: https://www.facebook.com/groups/453930091419767

Canada


Contact #1: Walter & Alexandra Perez
email: Walter@pfic.org; perez.alexandra@hotmail.com

Contact #2: Lisa Crompton
email: Lisa@pfic.org

PFIC Contact Germany

Contact #1: Nergiz Ulufer
email: nergiz.g@t-online.de
whatsApp:

Contact #1: Nikolina Adamic
email: adaminikolina@gmail.com

facebook: https://www.facebook.com/pfic.de

India

website: https://ordindia.in/

PFIC Contact Italy

Contact: Francesca Lombardozzi
email: pficitalia@hotmail.com
facebook: https://www.facebook.com/groups/1236390723382907

PFIC Contact Poland

Contact: Bernadetta Skora
email: pficnetworkpolska@gmail.com
facebook: https://www.facebook.com/PFIC-Network-Polska-100504395413610

United States

contact #1: Emily Ventura
email: emily@pfic.oprg

contact #2: Tara Kearns
email: tara@pfic.org

website: www.pfic.org