Here's a few links to organizations that support pfic...
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The Childhood Liver Disease Research Network (ChiLDReN) is a collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations. The ChiLDReN Network has clinical sites and research labs in the US and Canada, and also includes a research lab in London. These sites are working together to improve the lives of children and families dealing with rare liver diseases
Check out this great resource for PFIC families
The Child Liver Disease Foundation (CLDF) was formed in 1980 and is a unique national charity dedicated to taking action against the effects of all liver diseases of childhood. The CLDF is a comprehensive information hub for healthcare professionals and the general public. The CLDF provides a tailored support service for children and young adults with liver disease as well as for their families.