Friday, July 16
Conference Main Lounge
15:00-15:15 Welcome & Introduction to PFIC Network
Presented by: Emily Ventura
15:15-16:15 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
16:40-17:40 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
17:30-18:30 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
19:00-20:00 What is PFIC? For young patients (school age &
teens) Presented by: Dr. James Squires, MD
20:00-20:30 Peer Support & Engagement: Kids take over the
lounge
– Show & Tell / Arts & Crafts / Meet & Greet!
21:00-22:00 Pruritus & Nutrition in PFIC: “Back to the Basics”
Presented by: Dr. Ben Schneider
22:30-23:30 Ambassador Training, Western Europe, Asia,
South Pacific
00:00-all evening *Lounge will stay open to replay recordings of
earlier sessions
Saturday, July 17
Conference Main Lounge
15:00-16:00 Considerations related to COVID & PFIC
Presented by: Dr. Ron Sokol
16:10-17:20 Ambassador Training, North America, South
America, Eastern Europe
- Emily Ventura, PFIC Network
- Swapna Kakani, 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
17:30-18:30 Keynote Speaker #2: Genetics of PFIC by
Subtype Presented by: Dr. Richard Thompson, Dr. Laura Bull
19:00-19:45 Mental Health and Daily Life Concerns
Presented by: Nicola Sereni, Psicologist, Tara Kearns, LMSW, Emily Ventura, RN
20:15-21:15 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
21:30-22:30 Peer Support and Patient Engagement
Presented by: Parent/patient advisory board
22:30-23:00 Peer Support and Engagement
Patients and Caregivers Networking in Lounge
23:00-00:00 Inspiration, Motivation & Closing Remarks
00:00- all evening *Lounge will stay open to replay recordings of
earlier sessions
Friday, July 16
Global Ambassador Lounge
16:00-18:00
UK
17:30-19:30
Netherlands
20:00-22:00
Germany
22:00-00:00
Canada
Saturday, July 17
12:00-14:00
India
14:00-16:00
Pakistan
18:30-20:30
Italy
20:30-22:30
Poland
1:30-3:30
Australia