Global Liver Institute
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GLOBAL LIVER INSTITUTE
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Rare Liver Diseases Month Overview
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GLI LIVE conversations featured patients as the experts during the 2024 #RareAware initiative highlighting various forms of transitions in care processes addressing various diseases and how care can be changed.
From Pediatrics to Adult Care
Donna R. Cryer, JD, is joined by Sophie Hansen and Evren Ayik, who have both navigated the complexities of rare liver diseases since childhood to share their personal experiences offering listeners a glimpse into the hurdles they have overcome.
Forging a Path After Diagnosis
Donna R. Cryer, JD, is joined by Tina Money and Dr. Cecilia Duenas, fellow rare liver disease patients, to take a look at the emotional rollercoaster that accompanies the period post-diagnosis. They explore the questions, fears, and moments of resilience that define their experiences.
Navigating Liver Transplantation
Donna R. Cryer, JD, is joined by Maria Morais, a transplant patient, to delve into the nuances of care transitions post-transplantation. This episode takes a look at the role of healthcare providers, support networks, and the importance of self-advocacy in ensuring smooth transitions from the immediate post-transplant phase to long-term, sustainable health management.
Caregiving through Transitions
Donna R. Cryer, JD, is joined by Alice Williams and Kathy Spence, rare liver disease caregivers, to discuss the unique challenges of supporting a loved one with pediatric rare liver diseases. This episode explores the emotional and logistical challenges that caregivers encounter and emphasizes the need for greater support for caregivers during transitions.
The 2023 #RareAware initiative featured 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.
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.
GLI LIVE Episodes in rare took deep dives into just some of the over 100 rare liver diseases affecting patients worldwide.
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
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.
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.
Join experts diving identifying the challenges and providing actionable solutions surrounding rare liver diseases.
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.
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.