RareGen's Impact: Khartik Uppalapati on Science, Policy, and Patient Empowerment Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

RareGen's Impact: Khartik Uppalapati on Science, Policy, and Patient Empowerment

March 17, 2025 • Joanna • Season 4 • Episode 8

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Guest: Khartik Uppalapati, Co-founder of RareGen Youth Network

Episode Description:

In this episode of Rare Connection, host Joanna welcomes Khartik Uppalapati, a remarkable young leader at the intersection of biomedical research and rare disease advocacy. Khartik shares his personal journey with rare conditions, which ignited his passion for scientific innovation and healthcare policy reform.

We delve into Khartik's groundbreaking research in organoid intelligence, biological computing, and AI-driven diagnostics. He discusses his work at MIT's Lincoln Labs and Cincinnati Children's Hospital, as well as his contributions to antimicrobial research and machine learning-based antibiotic discovery.

Khartik also sheds light on the impactful work of RareGen Youth Network, an organization he co-founded to address systemic barriers faced by individuals with rare diseases. We explore RareGen's advocacy efforts, including their engagement with hundreds of families, policy reports, and initiatives to ensure equitable healthcare access and digital health protections.

Join us as we uncover Khartik's vision for a future where science, policy, and youth-led activism converge to create real, lasting change for the rare disease community.

Key Talking Points:

Khartik's personal experience with arteriovenous malformation and a rare lymphatic disorder.
The mission and impact of RareGen Youth Network.
Groundbreaking research in organoid intelligence and biological computing.
AI and machine learning applications in rare disease diagnostics and treatments.
Advocacy for equitable healthcare access and digital health protections.
The importance of youth-led activism in the rare disease community.
The work done with antimicrobial ligands, and machine learning based antibiotic discovery.
The work done with CBCT imaging and AI to determine skeletal age.

Resources:

RareGen Youth Network: (If they have a website, include it)
Khartik Uppalapati's arXiv paper: arxiv.org/abs/2411.06009
988 Suicide & Crisis Lifeline: Dial or text 988
Crisis Text Line: Text HOME to 741741

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