RareGen Youth Network is a youth-led organization that unites passionate young voices worldwide to advocate for transformative change within the rare disease community. Pulse 2.0 interviewed RareGen Youth Network President Khartik Uppalapati to learn more about the non-profit.
Khartik Uppalapati’s Background
What is Khartik Uppalapati’s background? Uppalapati said:
“I’m a biomedical researcher, AI innovator, and youth policy advocate currently studying at Oakton High School in Virginia. I was born with a rare vascular condition, arteriovenous malformation (AVM) and a lymphatic disorder, which meant spending much of my childhood navigating complex, often uncertain medical systems. That experience drove me to search for answers science wasn’t yet offering. Over time, my curiosity evolved into a deep desire to bridge the gap between biotechnology, AI, and patient advocacy. Today, I lead efforts across nonprofit advocacy, neurotechnology research, and computational biology, working with institutions like the University of Missouri, Harvard, and Cincinnati Children’s Hospital.”
Formation Of The Non-Profit
How did the idea for the non-profit come together? Uppalapati shared:
“RareGen Youth Network was born in 2020 from lived experience. I kept encountering systemic delays, fragmented care, and a striking lack of representation for rare disease patients, especially among BIPOC communities. Along with my co-founder Viraj Kamath, we launched RareGen as the first youth-led 501(c)(3) focused on rare disease equity. What started as a simple blog post and outreach project has since evolved into a global coalition influencing health legislation, building patient registries, and shaping policy at the UN, WHO, and European Commission.”
RareTech Launch
What inspired you to launch RareTech, and how do you envision the role of organoid intelligence in the future of computing and medicine? Uppalapati noted:
“The inspiration for RareTech came from a research bottleneck I encountered while studying protein conformational changes in PFIC, a rare liver disease. Existing computational tools were either too slow or lacked biological fidelity. That got me thinking: what if we could develop computing systems that emulate biological systems?”
“RareTech was my answer. We’re developing organoid intelligence (OI)-powered molecular computing platforms, essentially bioengineered brain-like tissues that can process data in ways silicon can’t. OI has the potential to revolutionize personalized medicine, drug discovery, and even AI ethics by embedding biological context into computational decision-making.”
Balancing Innovation And Social Impact
As a youth founder navigating both the startup and nonprofit worlds, how do you balance innovation, social impact, and strategic leadership? Uppalapati pointed out:
“It’s a balancing act. I’ve learned to treat every challenge like a system problem, whether that’s structuring our nonprofit’s growth or modeling a neural network. I have an incredible team that shares both mission and technical rigor, and that makes all the difference.”
“From a leadership standpoint, I’ve realized that purpose is the most effective long-term motivator. People will follow you through late-night coding sessions and policy deadlines if they believe in why you’re building something, not just what you’re building. The key is staying grounded in impact while being fearless in experimentation.”
Practical Applications Being Targeted
Your AI-powered brain-computer interface project, NeuroAssist, achieved an impressive 99.17% accuracy—what are the practical applications you’re targeting, and what’s next for the platform? Uppalapati predicts:
“NeuroAssist is designed to enable more intuitive communication between the brain and external devices, particularly for individuals with motor or speech impairments. We used a hybrid neural architecture that integrates a BERT-based NLP model, LSTM networks, and deep reinforcement learning (DQN) to classify motor imagery EEG signals.”
“In terms of application, we’re targeting assistive prosthetics, adaptive wheelchairs, and eventually brain-controlled interfaces for virtual environments. Our next step is field testing with real-time feedback loops and patient trials in collaboration with clinical partners. The long-term vision is to make neuroadaptive systems accessible, low-latency, and personalized.”
Opportunities Seen At The Intersection Of Biology And Computation
You’ve applied AI in fields from protein structure prediction to antibiotic discovery. How do you approach interdisciplinary research, and what opportunities do you see at the intersection of biology and computation? Uppalapati explained:
“To me, biology and AI aren’t separate fields, they’re deeply interwoven languages that describe life in different syntaxes. My approach is to first frame a biological question, like “What mutations in the ABCB11 gene correlate with BSEP dysfunction?” and then find the most efficient computational architecture to answer it.”
“We’re in a golden era for convergence. AI can drastically accelerate drug repurposing, identify off-target effects earlier, and model disease pathways with more nuance than ever before. But the real opportunity lies in making AI biologically aware infused with systems thinking, not just statistical prediction.”
Role Of Youth Voices In Shaping Tech And Healthcare
You’ve addressed the UN and contributed to EU digital policy—how do you see the role of youth voices in shaping tech and healthcare legislation globally? Uppalapati emphasized:
“I believe youth bring a necessary urgency and radical imagination to policymaking. We’re not entrenched in bureaucratic norms, and that allows us to ask better “what if” questions.”
“At the UN, I spoke about digital equity and rare disease care. We also submitted feedback to the European Commission’s Digital Services Act—focusing on data privacy for patients with rare conditions. My goal is to ensure that the ethical frameworks governing AI, bioinformatics, and digital health don’t leave vulnerable populations behind. Youth deserve not just a seat at the table—we deserve to help build the table.”
Challenges Faced
What are some of the challenges you faced while working at the non-profit (and how did you overcome those obstacles)? Uppalapati acknowledged:
“Early on, legitimacy was a major challenge. It’s hard to get policymakers and funders to take you seriously when you’re still doing AP Biology homework. But we turned that into an advantage—because no one understood the youth’s rare disease experience like we did.”
“We led with research, rigor, and real stories. That’s how we earned partnerships with Rare Diseases International, WHO’s youth consortium, and others. We’ve built a team that blends patient experience with technical excellence—and that’s what keeps us growing.”
Future Goals
What are your future goals, or where do you see yourself in the next five years? Uppalapati concluded:
“Over the next five years, I hope to expand RareTech’s organoid intelligence work into clinical validation phases and establish real-world integration for NeuroAssist in neurorehabilitation centers. I also want to pursue an MD/PhD focused on translational medicine and AI-driven therapeutics.”
“On the policy side, I aim to build an open-source, youth-led diagnostic equity registry. One that collects missed diagnosis data, flags disparities, and informs early intervention efforts globally. My broader goal is to create systems, technical, political, and human, that treat complexity with compassion.”
