Cholestatic Liver Disease Summit

Friday, June 27, 2025

All agendas are tentative. Times, sessions, and speakers are subject to change.

*Please note the afternoon sessions run simultaneously with both the Scientific Roundtable Meeting and Family Conference taking place at the Hyatt Regency. See below for times and details.

Research Roundtable Meeting @ Hyatt Regency

The Research Roundtable Meeting is designed for all stakeholders (patients, families, researchers, clinicians, and industry) to come together for a broad discussion of patient research priorities followed by working group discussions on specific topics. Each working group must consist of patients, caregivers, clinicians, researchers, and industry (biotech/pharma) representatives. These discussions are meant to deepen the connections with stakeholder groups leading to increased knowledge and potential paths forward to meet the research needs in cholestatic liver disease as well as PFIC, Biliary Atresia, and Alagille Syndrome as specific disease states.

7:00am -8:00am BREAKFAST

8:00am - 8:05am Welcome

8:05am - 8:20am Scientific Meeting Summary

Dr. Stacey Huppert; Dr. Kathleen Loomes

8:20am - 9:05am Research Roundtable Overview

9:05am - 10:05am Roundtable Session 1 - Topics to be announced

10:05am - 10:20am BREAK - Attendees change tables

10:20am - 11:20am Roundtable Session 2 - Topics to be announced

11:20am - 11:35am BREAK - Pick up lunch

11:35am - 12:10pm Lunch and Working Groups Reporting

12:10pm - 1:00pm Lunch continues - Kids arrive for lunch

1:00pm Break for families until 2:00pm

Start of Scientific Roundtable Meeting (see below)

Scientific Research Roundtable Meeting @ Hyatt Regency

The Scientific Research Roundtable Meeting is a chance for scientists and researchers working or interested in cholestatic liver disease to come together for a dynamic discussion in a separate location. This meeting is primarily for scientists, researchers.

12:30pm - 1:30pm ALGS

Discussion Leader

Binita M. Kamath, MBBChir, MRCP, MTR (Children’s Hospital of Philadelphia)

https://www.med.upenn.edu/apps/faculty/index.php/g275/p13006

1:30pm - 2:30pm PFIC

Discussion Leader

Richard J. Thompson, BM, BCh, MRCP, MRCPCH (King’s College London)

https://kclpure.kcl.ac.uk/portal/en/persons/richard.j.thompson

2:30pm - 3:30pm BA

Discussion Leader

Sanjiv Harpavat, MD, PhD (Texas Children’s Hospital)

https://www.texaschildrens.org/find-a-provider/sanjiv-harpavat-md-phd

3:30pm - 4:30pm PSC

Discussion Leader

Cara Mack, MD (Children’s Wisconsin)

https://childrenswi.org/physician-directory/m/mack-cara-lynn

CLD Family Conference @ Hyatt Regency

The Cholestatic Liver Disease Summit Family Conference provides presentations, panel discussions, expert talks, and fellowship time for Alagille Syndrome, PFIC, Biliary Atresia, and other cholestatic liver disease families. Sessions are appropriate for all stakeholder groups including patients, caregivers, clinicians, researchers, and industry.

**All sessions appropriate for all disease states unless otherwise specified.**

2:00pm - 2:15pm Welcome

2:15pm - 2:45pm Presenting Sponsor IPSEN

2:45pm - 3:15pm General Session: Patient Registries Panel

3:15pm - 3:45pm Presenting Sponsor Mirum Pharmaceuticals

3:45pm - 4:00pm BREAK

4:00pm - 4:10pm General Session: Advocacy that Matters to Cholestatic Liver Disease

Patients Speaker: Chris Porter, Travere Therapeutics

4:10pm - 5:00pm Advocacy Initiatives by Organization-Pass the Mic

Panelists from ALGSA, PFIC Network, BARE

5:00pm - 5:45pm Breakout Sessions:

Alagille Syndrome - Progression of ALGS

Alagille Syndrome - Cardiac Involvement, preparing for cardiac surgery, new novel research

Facilitators: Dr. Greg Adamson, Dr. Noelle Ebel

PFIC - PCORI-Community Engagement and Research

Facilitators: Dr. Jim Squires, Alex Perez, Melissa Kochanowsky, Dr. Gitta Lubke

Biliary Atresia - Early Detection/Newborn Screening

Facilitators: Dr. Sanjiv Harpavat/Dr. Tebyan Rabbani, Dr. Saeed Mohammad

Guest Presenter: Ashley Upton - A New Approach to BA Diagnostics