Uniting Youth. Transforming Lives in the Rare Disease Community

Rare diseases are often misunderstood, underrepresented, and leave millions of individuals feeling invisible. For Viraj Kamath, born with the ultra-rare liver disease PFIC 4, this was his reality. Growing up in India, Viraj faced a medical system unequipped to treat his condition. The isolation, fear, and frustration he experienced as a child were profound. When his family relocated to the United States for better medical care, Viraj’s world changed—but not in the way he expected. While he found treatment, he also discovered a new kind of loneliness: the sense of being one of the few facing an invisible battle.