July 16/17
Conference Main Lounge
18:00-18:15 Welcome & Introduction to PFIC Network
Presented by: Walter Perez, Tara Kearns, Emily Ventura
18:15-19:15 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
19:30-20:30 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
20:40-21:40 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
22:00-23:00 What is PFIC? For young patients (school age &
teens) Presented by: Dr. James Squires, MD
23:00-23:30 Peer Support & Engagement: Kids take over the
lounge
– Show & Tell / Arts & Crafts / Meet & Greet!
Saturday, July 17
00:00-01:00 Symptom Management: Pruritus & Nutrition
Presented by: Dr. Ben Schneider
03:00-all evening *Lounge will stay open to replay recordings of
earlier sessions
July 17/18
Conference Main Lounge
18:00-19:00 Considerations related to COVID & PFIC
Presented by: Dr. Ron Sokol
19:15-20:15 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
20:30-21:30 Keynote Speaker #2: Genetics of PFIC by
Subtype Presented by: Dr. Richard Thompson, Dr. Laura Bull
22:00-23:00 Mental Health and Daily Life Concerns
Presented by: TBA
23:15-00:15 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
Sunday, July 18
00:30-01:30 Peer Support and Patient Engagement
Presented by: Parent/patient advisory board
01:30-02:00 Peer Support and Engagement
Patients and Caregivers Networking in Lounge
02:00-03:00 Inspiration, Motivation & Closing Remarks
03:00-all evening *Lounge will stay open to replay recordings of
earlier sessions
July 16/17
Global Ambassador Lounge
16:00-18:00
UK
20:30-22:30
Netherlands
23:00-01:00
Germany
Saturday, July 17
01:00-03:00
Canada
15:00-17:00
India
17:00-19:00
Pakistan
19:30-21:30
Italy
Sunday, July 18
23:30-00:30
Poland
00:30-02:30
Australia