Welcome to our research highlight on Familial Chylomicronaemia Syndrome (FCS), presented by Metabolic Support and Action FCS.

FCS is an ultra-rare genetic disorder affecting just 1 to 2 people per million. It is caused by genetic mutations—most commonly in the LPL gene—that impair the body’s ability to process fats, leading to elevated triglyceride levels, characteristic “milky-white” blood, severe fatigue, cognitive difficulties, and a constant risk of acute pancreatitis.

While managing FCS has historically relied on severe dietary fat restriction and therapies like Volanesorsen, significant treatment burdens persist. Drawing from a 2025 community survey, this poster outlines the lived experiences of patients and carers, the daily impact on quality of life, and community perspectives on emerging treatments such as Olezarsen and Plozasiran.