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!
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
Website: https://rarevoices.org.au/
Canada
Contact #1: Walter & Alexandra Perez
Email: Walter@pfic.org; perez.alexandra@hotmail.com
Contact #2: Lisa Crompton
Email: Lisa@pfic.org
Website: https://www.liver.ca/
Website: https://www.raredisorders.ca/
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 Kingdom
Email: families@childliverdisease.org
Website: https://childliverdisease.org/
Facebook: https://www.facebook.com/CLDFonline/
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/
Help & Hope for Children with Digestive Disorders
Website: https://gikids.org/
NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases.
Website: https://rarediseases.org/