Patients & Parents

What is PFIC? Learn about the basics of this rare cholestatic liver disease.

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.

Read about the patient and family journey. While no two stories  are exactly alike, you may see common themes and meet families who have PFIC experiences similar to yours.

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

Download this educational resource for PFIC patients and families created to help you understand PFIC — the condition, the types and the medical terms.

Read recent posts from patients, caregivers and staff as they share stories, perspectives and advice on many of the facets of PFIC. Our writers touch on mental health, advocacy, program updates and much, much more. 

We compile articles, press releases and patient and family stories in the media — a one stop shop for news and articles. 

Read lay summaries of scientific articles related to PFIC and cholestatic liver diseases.

Apply for assistance to offset costs related to the burden of illness that PFIC can place on a family. 

Learn about virtual support sessions and other mental health resources.

Explore answers to frequently asked questions put together by patients and families for patients and families.

The Community Photo Wall is a place to show connection, togetherness and strength in fighting against PFIC. Photos shared are of patients and families who are going through the journey of life with this rare disease.

Access a list of worldwide support organizations that may provide support and resources to PFIC patients, parents and caregivers. Touch base with a local organization!

This webinar series addresses one of the toughest challenges facing PFIC patients — the itch!

Request  a care package for a patient, parent, caregiver or family member affected by PFIC.

In any rare condition (like PFIC) patient participation is crucial for clearer understanding and improving outcomes. By participating in the self-reported registry, you make a real difference in PFIC research and may help other patients like yourself.

Your voice is your superpower. Patient stories play an important role. By sharing your story, you can help patients and caregivers feel less alone, raise disease awareness, influence legislation, and even affect the way scientific research is conducted.

PFIC Awareness Day is October 5th! Every year, our global community comes together to raise awareness for PFIC related disorders. Join the cause!

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