Our community takes interest in sharing the patient experience to assist multiple different stakeholders in understanding the intricacies of our journeys. We welcome PFIC patient engagement requests from external stakeholders. Though there may be similarities, no two PFIC patient journeys are alike.

However, being such a rare community, we often struggle to find the energy to share over and over again. The PFIC Network encourages external stakeholders to reach out to our community to hear OUR stories. Our global community works together with our PFIC community to identify the right patient experiences for the right purpose. If you are interested in hearing from members of our community, please fill out the form on this page. It will help us understand your needs and be able to find the right patient or family for your purpose.