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

Send us Fan MailGuest: Khartik Uppalapati, Co-founder of RareGen Youth NetworkEpisode 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/2411.06009988 Suicide & Crisis Lifeline: Dial or text 988Crisis Text Line: Text HOME to 741741Connect with Rare Connection:YouTube: Rare Chef (Your YouTube Channel)Podcast: Rare Connection (Where to find your podcast)Facebook: (Your Facebook Page)X (Twitter): (Your X/Twitter Handle)LinkedIn: (Your LinkedIn Page)Call to Action:Subscribe to Rare Chef on YouTube.Subscribe to Rare Connection wherever you get your podcasts.Share this episode with someone who would benefit from hearing it.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 Markers00:00 Intro0310 Why Khartok became a reseaercher05:05 Genesis of Rare Gen Youth Network08:14 organoid Intelligence10:07 How AI and Machine learning is revaloutionizing treatment12:18 Antimicrobial Ligens & High performance computing13:56 Potential implicationsNext steps for research15:37 Next steps for Machine learning17:09 Hurdles of conducting research on rare diseases18:16 Common challenges faced by Youth and how they are overcome20:06 Key takeaways concdrning rare disease patients21:21 digital protections23:00 Global collaboration24:39 Equitable accessfor disabled youth & solutions25:44 success in influencing policy27:16 What policy makers should know'28:31 Long term goals & breakthroughs29:21 Advice for other researchers & advocates30:26 Measuring success &goals for the future of Rare Gen31:20 Misconceptions about rare diseases32:12 call to action34:00 conclusionSupport the show