Our community takes interest in sharing the patient experience to assist multiple different stakeholders in understanding the intricacies of our journey’s. Though there may be similarities, no two PFIC patient journey’s 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 patient engagement committee to identify the right patient experiences for the right purpose. If you are interested in hearing from a member or members of our community, please fill out the form on this page so that we can understand your needs and work with our team to find the right patient or family for your purpose.
Before submitting your inquiry, please take a moment to review the PFIC Network Patient Engagement Guidelines.
If you are a patient or family member and are interested in joining our patient engagement committee, please contact us and let us know! We’ll be happy to add you to our listserve!