Leading a Rare Youth Movement

When people with a rare disease accomplish a lot, someone might say they did so “despite their condition.” In the case of Khartik Uppalapati, it might be more appropriate to say “because of his conditions.” Uppalapati, a 16-year-old Virginia high school student, is a co-founder of the RareGen Youth Network, an organization designed to give voice to young people affected by rare diseases. He’s also an entrepreneur, scientific researcher, and international rights activist, all stemming from his experience as a someone with a rare disease. We spoke to Uppalapati about his journey as a rare disease patient, his work as an advocate, and why he thinks it essential that there be greater youth representation in healthcare policy and advocacy.