Global Liver Institute formed the Pediatric and Rare Liver Diseases Council in November 2020. Global Liver Institute’s 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.
Goals of the Pediatric and Rare Liver Diseases Council
Elevate the visibility and voice of the pediatric and rare liver diseases community
Strengthen the organizational infrastructure of pediatric and rare liver diseases organizations
Advance the policy agenda in pediatric and rare liver diseases
Identify common elements to accelerate research in pediatric and rare liver diseases
2021 Meeting Dates
All meetings will be virtual via Zoom at 9 am ET. Working groups may additionally meet ad hoc.
January 13: Policy working group meeting
March 17: Education working group meeting
April 14: Research working group meeting
May 19: Full Council meeting
June 23: Policy working group meeting
August 18: Education working group meeting
September 15: Research working group meeting
November 17: Full Council meeting
Council Members
Alagille Syndrome Alliance
American College of Gastroenterology (ACG)
American Gastroenterology Association (AGA)
Autoimmune Hepatology Association (AIHA)
American Association of Autoimmune Related Disorders (AARDA)
American Association for the Study of Liver Diseases (AASLD)
Associazione Malattie Autoimmuni Del Fegato( AMAF MONZA ONLUS)
Center for Autoimmune Liver Diseases-University of Milano-Bicocca
Community Liver Alliance (CLA)
Dutch Liver Patient Association (NLV)
Everylife Foundation
Foundation of the National Lipid Association
Gilead Sciences
Global Genes
Global Liver Institute
Hepatitis Hilfe Österreich – Plattform Gesunde Leber
Hospital Central de Maputo
Intercept Pharmaceuticals
Liver Mommas & Families
Mirum
NASH KNOWledge
North American Society For Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN)
PBC Foundation
PSC Children’s Hospital
PSC Partners Seeking a Cure
PSC Partners Seeking a Cure Canada
PSC Support
The Assistance Fund (TAF)
Travere Therapeutics
Learn more about the Council and apply for membership, or contact Nicole Wells, Pediatric and Rare Program Manager, at nwells@globalliver.org.