Alagille syndrome is a rare genetic disorder of the liver that occurs in approximately 1 in every 30,000 to 50,000 live births. Most existing literature in Alagille syndrome focuses on pediatric cases, but what about the roughly 80% of patients who reach adulthood?

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This past May, The Forum sent Dominika Wojdyla, a graduate student at Erasmus University Rotterdam and a member of the Forum’s Pediatric Cholestatic Liver Diseases (PCLD) program, to attend EASL 2026 in Barcelona, Spain. Wojdyla presented on outcomes for adolescent and adult populations. The work aims to identify predictors of long-term survival by analyzing real-world data and critical biomarkers, including total bilirubin and platelet counts. The work was well received at the congress and Dominika highlighted the invaluable collaboration of the Forum’s PCLD pediatric transition to adulthood working group, including Deirdre Kelly, Binita Kamath, Nikita Gupta, and especially her supervisor, Bettina Hansen, in bringing the project to life.