Our Story The Journey of RareGen
Rare diseases are often misunderstood, underrepresented, and leave millions of individuals feeling invisible. For Khartik Uppalapati, diagnosed with a rare lymphatic disorder, this was more than just a statistic—it was his reality. Growing up, Khartik faced not only the medical challenges of his condition but also the emotional burden of feeling like an outlier. As he navigated a world that seemed to overlook rare diseases, he found himself questioning why so many people with these conditions felt unheard. Instead of accepting this isolation, Khartik became determined to drive change, recognizing that young people like him had the power to reshape the narrative.
He wasn’t alone in this mission. Eeshan Dandamudi, living with eosinophilic asthma and a rare eye condition, understood the struggle firsthand. From battling daily health challenges to facing a system that often failed to acknowledge rare conditions, Khartik realized that awareness and advocacy were critical. He wanted to ensure that no young person with a rare disease felt powerless. Through his relentless drive, he pushed the conversation to the forefront, bringing rare disease advocacy onto global platforms, including the United Nations, and demanding action from policymakers.
Their vision aligned with that of Viraj Kamath, who was born with the ultra-rare liver disease PFIC 4. Growing up in India, Viraj faced a medical system unequipped to treat his condition. Even when his family relocated to the United States for better care, he discovered a new kind of loneliness—the isolation of being one of the few fighting an invisible battle. That changed when he learned a staggering truth: over 300 million people globally live with one of 7,000 rare diseases. These conditions, though labeled “rare,” collectively impact more lives than cancer and HIV combined. Viraj realized that he wasn’t alone—he was part of a vast, yet unheard, community.
Determined to change this reality, the three of them came together to form RareGen—a pioneering, youth-led nonprofit built on the foundation of shared experiences and a passion for making a difference. RareGen’s mission was clear from the start: to unite young voices, advocate for global awareness, and bring tangible support to those most in need.
Khartik spearheaded RareGen’s founding, starting with youth-led research collaborations, connecting young people with rare diseases to researchers working toward cures. Eeshan’s unwavering commitment to advocacy helped RareGen gain international recognition, ensuring that young people with rare diseases had a voice in the policy and healthcare spaces. Viraj, inspired by his own post-transplant challenges, led RareGen’s first major initiative—providing life-saving medications to underserved patients in India.
Today, RareGen is more than a nonprofit—it’s a movement. With chapters across the globe, peer-to-peer support networks, and groundbreaking advocacy efforts, RareGen is proving that youth leadership can transform the rare disease space. Every member of RareGen is united by the belief that no one facing a rare disease should feel alone or unheard.
RareGen’s journey is far from over. It’s a journey fueled by passion, driven by personal stories, and powered by the belief that together, we can create a world where every voice matters. And this is just the beginning. Join us in rewriting the narrative of rare diseases—one voice, one action, one life at a time.