FSGS creates scarring in the tiny filtering units of the kidneys, progressively affecting their function. For families with young children with the condition, the journey typically begins with alarming symptoms: unexplained swelling around the eyes and ankles, frothy urine, or unexplained fatigue that brings them to medical attention. For adults, the onset might appear amid career building, family raising, or retirement planning—transforming life’s trajectory without permission.

Your FSGS journey comes with unique challenges, but you don’t have to face them alone. Dedicated advocates stand ready with specialized resources, understanding, and support tailored to both young patients, their caregivers, and adults with FSGS.

NephCure has created a comprehensive network of support specifically designed for the FSGS community. Through educational materials, family support programs, and connections to specialized care, they transform overwhelming uncertainty into actionable knowledge and isolating experiences into shared understanding.