He wasn’t alone in this mission. Adan Eftekhari saw what Khartik was up against and recognized how easily people with rare conditions get pushed to the margins—overlooked by a healthcare system, a research pipeline, and a policy landscape that weren’t built with them in mind. He didn’t need a diagnosis of his own to understand that this was a fight worth joining. What Adan brought was a conviction that the rare disease community’s biggest obstacle wasn’t just medical—it was visibility. Too many patients were carrying their conditions alone, unaware that millions of others were fighting parallel battles, and no one was building the bridge between them.

So Adan set out to build it. He threw himself into the work of turning individual stories into collective pressure, seeking out young people with rare conditions and giving their experiences a platform. Where Khartik brought the lived experience of the diagnosis, Adan brought relentless organizing—the drive to get rare disease advocacy in front of people with the power to act on it. Together, they concluded that awareness and advocacy were inseparable, and that no young person with a rare disease should feel powerless. Through their combined efforts, they pushed the conversation to the forefront, bringing rare disease advocacy onto global platforms, including the United Nations, and demanding action from policymakers.What made their mission urgent was 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. Khartik and Adan weren’t alone—they were part of a vast, yet unheard, community.

Determined to change this reality, the two 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. Adan’s unwavering commitment to advocacy helped RareGen gain international recognition, ensuring that young people with rare diseases had a voice in policy and healthcare spaces. Together, they launched 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.