Share Your Story

Whether you are a patient, caregiver, family member, or friend, you have a unique and important story to tell about PFIC and related diseases. These stories are our community’s greatest tool, as they share our strength, resilience, and the lessons we’ve learned. They also help more clearly reveal our unmet needs, so that we can help guide advocacy efforts and inspire scientific research to address them.

View other patient stories

Use the form below to tell your story, and even attach photos and artwork.  Interested in sharing your story over video? Contact

My PFIC Story

BRIC, MDR3 deficiency, undiagnosed...
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When did you first show symptoms of illness? What were they? Did you experience issues with diagnosis? When you received your diagnosis, what feelings and thoughts did you have? How do those thoughts compare to how you feel now? What brings you hope? What is one thing you want people to know or understand about PFIC/BRIC patients? Share your experience with pre, during, and/or post transplant. After transplant, how did your life change?
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Max. file size: 512 MB, Max. files: 3.