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

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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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