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 5 main subject areas:
Our full library of PFIC webinars is also available on our Youtube Channel
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.
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.
|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.
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.
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.
|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.
|Part 1: Transplant Life and Complications (2020)||Dr. Jim Squires|
|Part 2: Specific Complications of Transplant (2020)||Dr. Kyle Soltys|
Preparing for Patient-Centered Outcomes Research in PFIC
|IMPACT Webinar Live Announcement & Information||Melissa Kochanowsky|