Global Liver Institute

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GLOBAL LIVER INSTITUTE

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Rare Liver Diseases Month Overview

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Every February, GLI LIVE features conversations with patients and physicians to share and discuss timely topics related to rare liver diseases.

Alagille Syndrome

Donna Cryer is joined by Cher Bork, Executive Director of Alagille Syndrome Alliance (ALGSA) and Shambhavi Ravishankar, Alagille syndrome patient, ALGSA board member, and attorney

Lysosomal Acid Lipase Deficiency (LAL-D)

Donna Cryer is joined by guests Dr. Don Wilson, pediatric endocrinologist at Cook Children’s Medical Center and Secretary of the Foundation of the National Lipid Association, and Rebecca Trendy, a mother of four boys living with lysosomal acid lipase

Newborn Screening Policy & Advocacy in Rare Liver Diseases

Donna Cryer is joined by guests Dylan Simon, Associate Director of Policy for the EveryLife Foundation for Rare Diseases and Melissa Gamble, Executive Director and Co-Founder of the Global Foundation for Peroxisomal Disorders and mother of Ginny, who passed at only 7 years old from Zellweger Syndrome; to discuss Newborn Screening Policy and Advocacy in Rare Liver Diseases.

Pediatric Rare Liver Disease

Donna Cryer is joined by guests Dr. William Balistreri, Cincinnati Children’s Hospital Medical Center, and Ms. Samantha Melaney, Author of “LiveReal” and organ donation advocate, to discuss Pediatric Rare Liver Diseases.

Primary Sclerosing Cholangitis (PSC)

Donna Cryer is joined by two members of GLI’s Pediatric and Rare Liver Diseases Council: Dr. Marco Carbone, a hepatologist at University of Milan-Bicocca, European Reference Network (ERN)’s clinical lead for cholestatic liver diseases, and PBC Foundation board member, and Cynthia Buness, the mother of a Primary Sclerosing Cholangitis (PSC) patient, GLI’s Pediatric and Rare Liver Diseases Council research working group co-chair, and Advanced Advocacy Academy alumna, to discuss the rare liver disease, PSC.

Primary Biliary Cholangitis (PBC)

Donna Cryer is joined by guest Dr. Cynthia Levy, hepatologist and Assistant Director of the Schiff Center for Liver Diseases, and patient guests Leslie Stratta and Bre Farley who are living with primary biliary cholangitis (PBC), to discuss this rare liver disease.

Racial Disparities in Rare Liver Disease Research

Donna Cryer is joined by Teneasha Washington, PhD, MPH, researcher and professor, and Veronica Williams, MS, Autoimmune Hepatitis (AIH) patient and AIH Association board member, to discuss racial disparities in rare liver disease research.

Rare Liver Cancers

Donna Cryer is joined by guests Sanford Simon, PhD, fibrolamellar carcinoma researcher & parent and Lisa Craine, cholangiocarcinoma patient & mentor, to discuss Rare Liver Cancers.