2023 PFIC Conference Agenda

PFIC Family & Scientific Conference 2023 Agenda

May 4-6 at Disney Coronado Springs in Orlando, FL and virtual

*The conference agenda is subject to change based on speaker availability, decided topics of conversation, or other topics that may take priority between now and the conference.*


3:00 PM

5:00 PM

7:00 – 9:00 PM

Thursday, May 4

Patient/Family Volunteer Rally

Check In Time & Poster Session

Welcome Dinner & Icebreaker Activity – Room Lantana


8:00 – 8:15 AM

8:15 – 8:45 AM

8:45 – 9:15 AM

9:15 – 10:00 AM

10:00 – 10:45 AM

Friday, May 5 – Room: Monterrey 1

Welcome Address

Keynote Address: Patient Centered Outcomes Research
Dr. Jim Squires, Children’s Hospital of Pittsburgh
Paired with: Alex Perez, Parent, Canada

PFIC Network Science & Research Program: Updates on the Registry, Grant Proposals, and the Science Blog + Q&A
Dr. Gitta Lubke, PFIC Network

Clinical Care for PFIC: What does “disease progression” mean, and how do you measure it? + Q&A
Dr. Benjamin Shneider, Texas Children’s Hospital
Paired with: Rachael Turek, Parent, USA

Liver Transplant in PFIC
Dr. Greg Tiao, Cincinnati Children’s Medical Center
Paired with: Brittany Brinson, Parent, USA

Short Break
10:45 – 11:15
30 Minutes

11:15 – 12:00 AM

12:00 – 12:45 PM

Therapeutic Development 101: What it takes to develop a new therapy
Part 1: From concept through clinical trials (15 minutes) Presented by: Lara Longpre, Mirum Pharmaceuticals
Part 2: Submitting for regulatory approval and commercializing (15 minutes) Presented by: Lauren Wilkinson, Albireo Pharmaceuticals
Paired with: Cadence Crompton, Patient, Canada

Taking Research from Bench-to-Bedside: Chaperones and PFIC + Q&A (virtual)
Dr. Thomas Falguières & Dr. Emmanuel Gonzales, Universitè Paris- Saclay
Paired with: Laura Susoi, Parent, Canada

Lunch Break
12:45 to 1:30

1:30 – 2:15 PM

2:15 – 3:00 PM

3:00 – 3:45 PM

3:45 – 4:30 PM

The psychosocial impact of living with a rare chronic disease on youth and their families + Q&A
Caitlin Shneider M.A., Doctoral Candidate, Georgia State University
Paired with: Cedar Ventura, Patient, USA

Updates from ChiLDReN + Q&A
Dr. Paula Hertel, Texas Children’s Hospital
Paired with: Rocio Cavazos, Parent, Mexico

Updates from the NAPPED Consortium 
Antonia Felzen, MD/PhD candidate, University of Groningen, Netherlands
Paired with: Tara Kearns, Parent, USA

What’s with the Number? PFIC Subtypes and the Meaning of a Genetic Diagnosis
Dr. Richard Thompson, Kings College London
Paired with: Brittany Brinson, Parent, USA

Short Break
4:30 – 4:45
15 Minutes

4:45 – 5:30 PM

5:30 – 5:45 PM

6:00 – 8:00 PM

Full Panel Roundtable
All presenters, Open Q&A with discussion

Conference Debrief Activity (Closed session for Patients and Families)
Lisa Jensen to Lead

Networking Reception at Villa Del Lago


8:00 – 9:00 AM

9:20 – 10:20 AM

Saturday, May 6

Science Engagement Focus Group (CLOSED)

PFIC Network Patient Registry Focus Group (CLOSED)