July 16/17
Conference Main Lounge
18:30-18:45 Welcome & Introduction to PFIC Network
Presented by: Walter Perez, Tara Kearns, Emily Ventura
18:45-19:45 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
20:00-21:00 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
21:10-22:10 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
22:30-23:30 What is PFIC? For young patients (school age &
teens) Presented by: Dr. James Squires, MD
23:30-00:00 Peer Support & Engagement: Kids take over the
lounge
– Show & Tell / Arts & Crafts / Meet & Greet!
Saturday, July 17
00:30-01:30 Pruritus & Nutrition in PFIC: “Back to the Basics”
Presented by: Dr. Ben Schneider
03:30-all evening *Lounge will stay open to replay recordings of
earlier sessions
July 17/18
Conference Main Lounge
18:30-19:30 Considerations related to COVID & PFIC
Presented by: Dr. Ron Sokol
19:45-20:45 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
21:00-22:00 Keynote Speaker #2: Genetics of PFIC by
Subtype Presented by: Dr. Richard Thompson, Dr. Laura Bull
22:30-23:15 Mental Health and Daily Life Concerns
Presented by: Nicola Sereni, Psicologist, Tara Kearns, LMSW, Emily Ventura, RN
00:15-00:45 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
Sunday, July 18
01:00-02:00 Peer Support and Patient Engagement
Presented by: Parent/patient advisory board
02:00-02:30 Peer Support and Engagement
Patients and Caregivers Networking in Lounge
02:30-03:30 Inspiration, Motivation & Closing Remarks
03:30-all evening *Lounge will stay open to replay recordings of
earlier sessions
July 16/17
Global Ambassador Lounge
16:30-18:30
UK
21:00-23:00
Netherlands
23:30-1:30
Germany
Saturday, July 17
01:30-03:30
Canada
15:30-17:30
India
17:30-19:30
Pakistan
20:00-22:00
Italy
Sunday, July 18
00:00-01:00
Poland
01:00-03:00
Australia