Pediatric and Rare Liver Diseases Council
Born from the urgent need to give patients a voice in liver health, the Pediatric and Rare Liver Diseases Council brings together non-profit, for-profit, government, and patient representatives who are committed to addressing the challenges and impact of pediatric and rare liver diseases on individuals, communities, and organizations around the world.
View our Pediatric and Rare Liver Diseases Council members:
View our Pediatric & Rare Liver Diseases Council individual members:
Ahmad Anouti, MD, BA Patient Rep and UT Southwestern
Marco Carbone, Prof, University of Milano-Bicocca
Pietro Invernizzi, MD, University of Milano-Bicocca
Ben Hainsworth, EASL
Dave Jones, Prof, Newcastle University
Carlo Dionisi Vici, MD, Bambino Gesù Children’s Hospital
Rohit Kohli, MBBS, MS, MD, Children’s Hospital Los Angeles
Kathleen Teixeira, AGA (American Gastroenterological Association)
Cynthia Buness, PSC Caregiver Rep
Taylor Rhoades, BA Caregiver Rep
RESOURCES:
Primary Biliary Cholangitis (PBC) Externally-Led Patient-Focused Drug Development (EL-PFDD) Report
Co-developed on February 4, 2022 with more than 30 members of the Pediatric and Rare Liver Diseases Council, national patient advocacy organizations, and GLI’s Liver Action Network, the PBC EL-PFDD combines survey findings with testimony from clinicians, patients, and caregivers to document the lived experience of primary biliary cholangitis (PBC) and ensure these insights inform FDA reviews, treatment development, and future regulatory decisions.
Changes in Rare Disease Medication Resource
Developed in December 2025 with guidance from Dr. Julio Guitterez, an expert transplant hepatologist at Scripps Health, expertise from primary biliary cholangitis (PBC) patient advocacy organizations, and with the support of Intercept Pharmaceuticals, this resource uses primary biliary cholangitis (PBC) as a case study to provide guidance for what the next step looks like when a rare disease medications is discontinued.
Conquering Cholestatic Pruritus Webinar
On December 9, 2022, our council hosted a three-part event on cholestatic pruritus, bringing together clinicians, patients, and caregivers to better understand the severe and often overlooked itch experienced in cholestatic liver diseases. The series explored what pruritus feels like in daily life, how it is currently managed, common misconceptions, and emerging innovations in treatment, with the goal of improving shared understanding of symptom burden and highlighting gaps in current care and management.
