Educational PFIC Webinar Series

We are excited to offer our community a large library of educational PFIC webinars about a variety of PFIC topics. Many of these videos were recorded at past PFIC Network Family and Scientific Conferences and feature expert PFIC clinicians and researchers generously sharing their knowledge and expertise. From PFIC genetics to the myriad of treatment options available, these videos are designed for the patient and family audience to help you better understand the complexities of life with PFIC and related diseases.

The webinars cover the following main subject areas:

2024 PFIC Family & Scientific Conference Recordings

Want to catch up on the 2024 PFIC Family & Scientific Conference? Recordings from the 2024 Conference are sorted under their topical headings below and have (2024) after their titles. If you would prefer to watch all the recordings together, check out our 2024 Conference Youtube playlist !

General PFIC Information

Don’t know where to start? These videos give general disease information about PFIC and related diseases and what to expect along your PFIC journey. They will cover information such as how the liver works, how PFIC affects the liver and an overview of symptoms and available treatments.

TitlePresented By
PFIC 101- Children’s Hospital of Colorado (2020)Dr. Cara Mack, Dr. Amy Feldman, Dr. Dania Brigham, Kelly Klaczkiewicz, RD
PFIC 101 For Kids: An Easy to Understand Overview (2021)Dr. Jim Squires
Considerations Related to Covid & PFIC (2020)Dr. Ron Sokol
PFIC in Adults: Diagnosis & Onset (2024)Dr. Silvia Vilarinho

Mental Health, Caregiver Support and Coping Strategies

It is easy to get caught up in symptom management and disease information and forget that a PFIC diagnosis is a major life-changing event and you might need additional support to manage the challenges that accompany living with a rare and chronic disease. These videos cover coping strategies for rare disease patients and caregivers and provide information about managing the psychological effects of chronic pruritus.

TitlePresented By
Mental Health: Coping Strategies for the Patient and Caregiver (2020)Cristol O’Loughlin

Rare & Resilient Webinar Series: A New Perspective on Coping with Pruritus

Rare and Resilient is special webinar series held in honor of Rare Disease Month in February 2023. It addresses one of the most challenging problems facing PFIC patients and their families: the itch and how to better manage it. While these videos are centered around the specific issue of pruritus, many of the skills and strategies are also applicable to other life challenges.

TitlePresented By
Considering the Role of Stress in Pruritus (2023)Caitlin Shneider
Tips for Managing Stress (2023)Caitlin Shneider
Thinking About Thinking (2023)Caitlin Shneider
Evidence Based Interventions for Chronic Itch (2023)Caitlin Shneider
Tips for Finding a Therapist (2023)Caitlin Shneider

PFIC Genetics, Types and Subtypes

PFIC1? BSEP deficiency? BRIC?  Learn all about the many types and subtypes of PFIC, how genetic testing works, how genetics impact PFIC treatments and more.

TitlePresented By
Genetics of PFIC and Its Subtypes (2020)Dr. Richard Thompson
Basics of Genetics, Introduction to PFIC as a set of Genetic Disease of Cholestasis (2021)Dr. Akihiro Asai, Dr. Chunyue Yin, Dr. William Balistreri,
Genetics of PFIC by Subtype (2021)Dr. Richard Thompson

PFIC Treatment Options

While there is currently no cure for PFIC, different treatment options exist to target PFIC symptoms. These videos cover a variety of medical and surgical options, including nutrition, medication, diversion surgery and liver transplantation.

TitlePresented By
Current and Emerging PFIC Treatment Landscape (2024)Dr. Paula Hertel
Pre-Transplant PFIC Diet & Nutrition (2024)Panel Discussion
Medical and Surgical Options Video Part 1 (2020)Dr. Jim Squires
Medical and Surgical Options Video Part 2 (2020)
Dr. Kyle Soltys

Liver Transplantation in PFIC Patients

PFIC patients and families often need to consider liver transplantation at some point in their PFIC journey. These webinars cover general liver transplantation information as well as PFIC-specific possible complications and risks, including allo-immune BSEP disease (AIBD) and challenges specific to FIC 1 deficiency.

TitlePresented By
Current Prognosis and Prospects of Liver Transplant (2024)Dr. Henkjan Verkade
Part 1: Transplant Life and Complications (2020)Dr. Jim Squires
Part 2: Specific Complications of Transplant (2020)Dr. Kyle Soltys

PFIC Network Research Projects: IMPACT, PFIC Network Patient Registry

Did you PFIC Network has several ongoing research projects? Find out about more about our research initiatives!

TitlePresented By
IMPACT Updates from the PFIC Family & Scientific Conference (2024)IMPACT Project Team
PFIC Network Patient Registry Updates (2024)Dr. Gitta Lubke
IMPACT Webinar Live Announcement & Information (2023)Melissa Kochanowsky

PFIC Research and Gene Therapy

Many recent scientific advances focus on treating the symptoms of PFIC. We are also looking ahead to cutting edge PFIC research and potential future treatments that address the root causes of PFIC.

TitlePresented By
Future Treatments of PFIC (2024)Dr. Akihiro Asai
Research Workshop Summary & Conference Closing Remarks (2024)Various
Assessment and Communication of Risk in Gene Therapy (2024)Dr. Lorenzo D’Antiga