Clinicians & Researchers

This roadmap is a planning tool for patient-centered comparative clinical effectiveness research in PFIC, built on insights from families, clinicians, and researchers during IMPACT, our two-year PCORI-funded initiative.

Our patient registry collects patient-reported outcomes on diagnoses, symptoms, treatments, itch, sleep, general health, quality of life, and financial burden -helping promote research that centers on patients’ lived experiences.

Submit a request to utilize de-identified data from our patient registry or to get permission to reach out to current participants who have opted in to be informed about research opportunities.

PFIC Network provides funding opportunities for PFIC research that leads to improvements in the lives of PFIC patients and their caretakers. Learn more about research that we have funded and view current funding opportunities.

PFIC Network provides information about external planned and ongoing PFIC research.

Download this educational resource for PFIC patients and families created to help them understand PFIC — the condition, the types and the medical terms. Available in 15+ languages!

View a series of educational webinars and conference session recordings to better understand the PFIC diagnosis, genetics and treatment options.

The PFIC IMPACT:TEA was designed by PFIC families and clinicians as a living resource to provide information about PFIC treatments and patients’ experiences with them

We understand the value of educational resources and handouts for families at the point of diagnosis. We have both printed and digital materials for you to use here.

Send a free care package to a patient, parent, caregiver or family member affected by PFIC.

See all events, council meetings and community initiatives coming up. 

Whether we can help you on your journey as a patient, connect you with one of our programs, help you find resources, or you just have a general inquiry, connect with us at any time!

Stay up to date on the latest from PFIC Network. 

We bring together patients & families, clinicians, researchers and industry to share scientific knowledge, share patient experiences and identify ways we can collectively improve the lives of patients and families affected by PFIC.

See the thought leaders on our Scientific Medical Advisory Board who provide us with expert scientific advice

Raise money for PFIC research and community support programs by hosting your own fundraiser!