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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

  1. Elevate the visibility and voice of the pediatric and rare liver diseases community

  2. Strengthen the organizational infrastructure of pediatric and rare liver diseases organizations

  3. Advance the policy agenda in pediatric and rare liver diseases

  4. 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.