The PFIC Network is an organization that represents the patient community. We are looking for up to 10 patients or caregivers who are interested in sharing their experiences with PFIC for this purpose.
We only have one hour to speak with the FDA, and only a few of us can speak, but we want to make sure that we provide an opportunity for every voice to be heard.
There are 3 ways that you can get involved as a patient or caregiver.
- Join the patient registry: We need to build up our patient registry. There are no approved treatments for PFIC, but there is a HUGE need. The goal of our registry is to document that need and SHOW how it exists. If we can meet our participation goal, we plan to put together a brief data analysis report to show the FDA that though we may be rare, we are everywhere. Click here to learn more about the patient self report registry
- Apply to Share your Story: We are looking for a diverse group of patients and caregivers who are interested and willing to share their story with the FDA. With these stories, we plan to show how the impact of itching, living with a progressive liver disease, facing liver transplant and the burden of PFIC affects the lives of patients and caregivers. In order for treatments to be developed, regulators need to understand the devastating urgency in the daily life of a PFIC patient.
Any patient or caregiver from anywhere in the world is able to apply to tell your story. Please contact us if you are interested. The PFIC Network team will reach out with further instructions.
- Document your experience with Art: You don’t have to be an artist to participate in sharing your experience in this way. Art can be a very therapeutic tool for those who experience hardship, and living with PFIC is not easy. The PFIC Network invites you, the patient or caregiver, to draw. Draw a picture that shows “How the burden of PFIC affects you.” What emotions do you feel; fear, sadness, exhaustion, resilience, hope?? Whatever you feel, get it out on paper. We plan to put these pictures together in a gallery. We will take this gallery to the FDA and we will share them on Rare Disease Day. Please contact us if you are interested in sharing an image for our gallery.