Some of these sessions were recorded and are available to view in our Educational Webinar Library.
Friday, July 16
Conference Main Lounge
9:00-9:15 Welcome & Introduction to PFIC Network
Presented by: Walter Perez, Tara Kearns, Emily Ventura
9:15-10:15 Keynote Speech #1: Basics of Genetics,
Introduction to PFIC as a set of Genetic Disease of
Cholestasis Presented by: Dr. William Balistreri, MD, Dr. Chunyue Yin, PhD
10:30-11:30 What’s in the Research
- Introduction to research in PFIC, what barriers exist
Presented by Dr. Henkjan Verkade, MD - NAPPED Study
Presented by Dr. Henkjan Verkade, MD - What is known: Pruritus
Presented by Dr. Binita Kamath, MD - The PFIC Patient Registry in partnership with CoRDs
11:40-12:40 Scientific Discussions: Drug Development related to PFIC
Update on IBAT Inhibitors: BylvayTM (odevixibat) and Ensuring Patient Access to PFIC Therapy
Presented by: Christine Clemson, M.S.C.I., PhD. & Pamela Stephenson, Albireo Pharma
Update on ASBT Inhibitors: Maralixibat
Presented by: Pamela Vig, PhD, Mirum Pharmaceuticals
Discussions about Gene Therapy
Presented by: Pamela Vig, PhD, Mirum Pharmaceuticals
1:00-2:00 What is PFIC? For young patients (school age &
teens) Presented by: Dr. James Squires, MD
2:00-2:30 Peer Support & Engagement: Kids take over the
lounge
- Show & Tell / Arts & Crafts / Meet & Greet!
3:00-4:00 Pruritus & Nutrition in PFIC: “Back to the Basics”
Presented by: Dr. Ben Schneider
6:00 pm -all evening *Lounge will stay open to replay recordings of earlier sessions
Saturday, July 17
Conference Main Lounge
9:00-10:00 Considerations related to COVID & PFIC
Presented by: Dr. Ron Sokol
10:10-11:20 Ambassador Training, North America, South
America, Eastern Europe
- Emily Ventura, PFIC Network
- Swapna Khakani, Everylife Foundation
- Francesca Lombardozzi, PFIC Italia Network
- Bernadetta Skora, PFIC Network Polska
- Dania Nair & Andrew Scott, Global Liver Institute
- Michelle Wilkins, Children’s Liver Disease Foundation
- Sindee Weinbaum, European Liver Patient Association
11:30-12:30 Keynote Speaker #2: Genetics of PFIC by
Subtype Presented by: Dr. Richard Thompson, Dr. Laura Bull
1:00-1:45 Mental Health and Daily Life Concerns
Presented by: Nicola Sereni, Psicologist, Tara Kearns, LMSW, Emily Ventura, RN
2:15-3:15 Q&A Present Panel Discussion
Panelists: Dr. Ben Schneider, Dr. Richard Thompson, Dr. Laura Bull, Dr.
Henkjan Verkade, Dr. James Squires, Dr. Alexander Miethke, Dr. Chunyue Yin, Dr. William Balistreri
3:30-4:30 Peer Support and Patient Engagement
Presented by: Parent/patient advisory board
4:30-5:00 Peer Support and Engagement
Patients and Caregivers Networking in Lounge
5:00-6:00 Inspiration, Motivation & Closing Remarks
6:00 pm -all evening *Lounge will stay open to replay recordings of earlier sessions
Friday, July 16
Global Ambassador Lounge
7:00-9:00
UK
11:30-1:30
Netherlands
2:00-4:00
Germany
4:00-6:00
Canada
Saturday, July 17
Global Ambassador Lounge
6:00-8:00
India
8:00-10:00
Pakistan
12:30-2:30
Italy
2:30-4:30
Poland
6:30-8:30
Australia