Ep. #061 – Rare Gen: Young Leaders Making Waves in Rare Disease Advocacy with Viraj Kamath and Khartik Uppalapati

In this episode of the It Matters podcast, Walter Perez discusses rare diseases and advocacy with guests Viraj and Khartik, co-founders of Rare Gen. Released just before Rare Disease Day, the episode highlights the importance of raising awareness and supporting those affected by rare conditions. Walter shares his personal connection as a parent of a child with a rare disease, while Viraj and Khartik discuss their own experiences and the mission of Rare Gen. They emphasize the power of youth advocacy, the importance of community, and the need for broader participation in legislative efforts to drive meaningful change. Viraj Kamath is a leader and highly passionate individual who is on a mission: giving back to his community. Viraj comes from humble beginnings, from being born with a rare liver disease known as PFIC, to having to move continents to the United States in order to be treated for his disease. As a Founder of RareGen, Viraj believes in the power of community, and strives to connect and support those facing similar struggles to him. Through his leadership, not only with RareGen, but in all things he does, Viraj aims to create a caring, equitable, and inclusive society for everyone. Khartik Uppalapati is a dedicated leader committed to making a difference in his community. In 2021, he was diagnosed with chronic lymphedema. This condition hasn’t deterred his passion for positive change. As Founder of RareGen, Khartik brings a wealth of determination, knowledge, and drive to his role. Despite facing health challenges, he remains focused on giving back and supporting those in need.