Amazing Ways tech is helping people with rare disease!

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Rare disease patients often face long diagnostic delays, limited access to clinical trials, and challenges in finding treatments. Traditional medical records don’t always capture the full picture, making it harder to identify and support these patients. But what if advanced data and AI could change that?

In this episode of Rare Connection, I’m joined by Jeff McDonald, CEO of Kythera Labs, to discuss how AI and data analytics are revolutionizing rare disease care. We explore how these technologies are helping to:
✅ Identify rare disease patients faster
✅ Improve clinical trial matching and recruitment
✅ Speed up drug discovery and access to treatments
✅ Empower patient advocacy with real-world data

If you or a loved one has struggled to navigate the rare disease space, this conversation is packed with insights that could make a difference.

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0:00:00 Intro
0:02:38 Why it is so hard to identify rare disease patuents in traditional healthcare systems
0:06:17 How gaps in medical records & diagnosis codes Impact access to treatment
0:11:15 barriers patients face when enrolling in clinical trials
0:14:46 gaps in medical Records
0:18:17 How AI & advanced data Analytics are revolutionizing healthcare
0:23:02 How Kythera labs is helping rare disease patients
0:26:24 Examples of how AI has sped uo access to treatment
0:29:21 How Kythera's platform improves the efficuency of clinical trials
0:32:59 How AI can help pharmeceutical companies develop treatments faster
0:34:30 Promising trends & breakthroughs in how AI is shaping drug discovery
0:41:07 How real wirld data is expanding treatment options for rare disease patients
0:45:45 How real World data can benefit patient advocacy groups benefit from data driven insites
0:49:23 Jeff's Prediction for how AI will shape the future over the next 5 to 10 years
0:50:53 balancing patient data with concerns about privacy consent
0:53:51 safe guards to ensure ethical use of data in rare disease research
0:55:31 advice to rare disease patients
0:58:36 How you can get involved with Kythera Labs
1:00:38 How you can stay up ti date on Kythera's work
1:02:16 conclusion

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