Global Support Contact Directory

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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 logo

Worldwide

Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases.

Website: https://globalgenes.org/

Australia

Contact #1: Melanie Karakaidos
Website: https://pficrdaustralia.org/
Email: melanie@pficrdaustralia.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

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

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

India

Website: https://ordindia.in/

Main Website: https://www.indousrare.org/

Financial Advocacy Information: https://www.indousrare.org/financialadvocacy/

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: Melissa Kochanowsky
Email: melissa@pfic.org

Website: www.pfic.org

The American Liver Foundation facilitates, advocates, and promotes education, support, and research for the prevention, treatment, and cure of liver disease.

Website: https://liverfoundation.org/

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.

Website: https://gikids.org/

NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases.

Website: https://rarediseases.org/