Global Liver Institute
GLOBAL LIVER INSTITUTE
The #RareAware initiative is accompanied by a series of informative videos and podcasts featuring medical practitioners, patients, and providers who provide valuable perspectives on the difficulties faced by the maternal rare liver disease community.
The Provider Perspective on Patient Access
During this roundtable, our host, Donna Cryer, is joined by guests Kathleen Schwarz, MD, a pediatric hepatologist at Rady Children’s Hospital in San Diego and founding GLI board member. We also had Laura Bonebrake, MD, an OB/GYN and medical advisor at ICP Care, talk about access to care and healthcare navigation in maternal, neonatal, and pediatric health care.
Patient Advocacy in Rare Liver Disease
During this roundtable, Donna Cryer, Jennifer Lau, and Donna Benavides joined together to discuss the patient advocacy work they have taken on in the past few years in order to change the landscape of the rare liver community.
Parents & Partners
During this roundtable, Donna Cryer is joined by patients Kara Ayik, Alex Summers, and Cristina Summers through a discussion to share their experiences and insights about what it is like to be a caregiver for those who have a rare liver disease.
Every February, GLI LIVE features conversations with patients and physicians to share and discuss timely topics related to rare liver diseases.
Maternal and Neonatal Care in Italy and Cameroon
In this episode of GLI LIVE, our host, Donna Cryer, is joined by guests Dr. Pietro Vajro, Dr. Mbianke, and Nasah Judith Lainsi in a discussion about the current landscape of rare liver disease in low-resource and low income countries and what actions should be taken to address these disparities.
Parenthood in Rare Liver Disease
In this episode of GLI LIVE, our host, Donna Cryer, is joined by guests Brittany Kinsley, Taylor and Ashley Rhoades to discuss the intricacies of being a parent of a child with a rare liver disease.
Driven to Fight Inequality in Maternal and Neonatal Care
In this episode of GLI LIVE, our host, Donna Cryer, is joined by guests Anna Beeman, Trashaun Powell, and Jodi Long to discuss major inequities in rare liver disease for patients in maternal and neonatal health.
The Rare Odyssey in Pregnancy
In this episode of #GLILIVE, our host, Donna Cryer, is joined by guests Dr. Guadalupe Manrique-Maldonado and Colette Kenny Verdes to discuss the challenges faced during pregnancy by members of the rare liver disease community.
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.