Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network
Progressive Familial Intrahepatic Cholestasis is a rare genetic liver disease that typically presents in early childhood and progresses to liver failure before puberty. There are a variety of different subtypes of the disease which lead to varying disease courses, but share common symptoms, including severe and debilitating pruritus (itching).
When founder Emily Ventura discovered the PFIC patient community three years after her daughter’s PFIC diagnosis, she not only found more information on the disease, but for the first time as a young mother, she found strength and hope. It became her mission to connect patients with information and community from day one, so that no patient would have to battle PFIC alone, ever again.
In rare disease, patients sometimes understand their disease better than doctors. As part of the Rare As One Network, PFIC Network aims to ensure that research advances in ways that are most meaningful to the patients, and to search for answers to the burdens that affect their daily lives.