UTC +5:30 (India)

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