Friday, July 16
Conference Main Lounge
14:00-14:15 Welcome & Introduction to PFIC Network
Presented by: Emily Ventura
14:15-15:15 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
15:40-16:40 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
16:30-17:30 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
18:00-19:00 What is PFIC? For young patients (school age &
teens) Presented by: Dr. James Squires, MD
19:00-19:30 Peer Support & Engagement: Kids take over the
lounge
Show & Tell / Arts & Crafts / Meet & Greet!
20:00-21:00 Pruritus & Nutrition in PFIC: “Back to the Basics”
Presented by: Dr. Ben Schneider
23:00 -all evening *Lounge will stay open to replay recordings of
earlier sessions
Saturday, July 17
Conference Main Lounge
14:00-15:00 Considerations related to COVID & PFIC
Presented by: Dr. Ron Sokol
15:10-16:20 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
16:30-17:30 Keynote Speaker #2: Genetics of PFIC by
Subtype Presented by: Dr. Richard Thompson, Dr. Laura Bull
18:00-18:45 Mental Health and Daily Life Concerns
Presented by: Nicola Sereni, Psicologist, Tara Kearns, LMSW, Emily Ventura, RN
19:15-20:15 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
20:30-21:30 Peer Support and Patient Engagement
Presented by: Parent/patient advisory board
21:30-22:00 Peer Support and Engagement
Patients and Caregivers Networking in Lounge
22:00-23:00 Silent Auction, Celebration of Life, and Wrap Up
23:00-all evening *Lounge will stay open to replay recordings of
earlier sessions
Friday, July 16
Global Ambassador Lounge
12:00-14:00
UK
16:30-18:30
Netherlands
19:00-21:00
Germany
21:00-23:00
Canada
Saturday, July 17
11:00-13:00
India
14:00-16:00
Pakistan
17:30-19:30
Italy
19:30-21:30
Poland
23:30-01:30
Australia