CEST: UTC +2 (Rome)

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