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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• If you or someone you know is struggling with mental health, please reach out to the 988 Suicide & Crisis Lifeline, or the Crisis Text line.

Chapter Markers
00:00 Intro
0310 Why Khartok became a reseaercher
05:05 Genesis of Rare Gen Youth Network
08:14 organoid Intelligence
10:07 How AI and Machine learning is revaloutionizing treatment
12:18 Antimicrobial Ligens & High performance computing
13:56 Potential implicationsNext steps for research
15:37 Next steps for Machine learning
17:09 Hurdles of conducting research on rare diseases
18:16 Common challenges faced by Youth and how they are overcome
20:06 Key takeaways concdrning rare disease patients
21:21 digital protections
23:00 Global collaboration
24:39 Equitable accessfor disabled youth & solutions
25:44 success in influencing policy
27:16 What policy makers should know'
28:31 Long term goals & breakthroughs
29:21 Advice for other researchers & advocates

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