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Episode FIFTY. Birthday FOUR. Patients UNCOUNTED.
Episode 103rd September 2022 • Raising Rare • Raising Rare
00:00:00 00:38:39

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When we first met, Raghav was just one year old, and they had just gotten his diagnosis. That was 3 years and 50 episodes ago. Raghav is now 4 years old and Sanath has started a new non-profit organization called Open Treatments. In this episode we talk about both.

The birthdays bring a lot of emotions. Each one is precious. At the same time, today’s technology brings back all the memories leading up to his birth and then the first weeks of his life. Happy highs and scary lows.

Open Treatments started with very high expectations to address some of the biggest challenges to developing treatments for kiddos like Raghav. Sanath has learned that there are such fundamental pieces of the puzzle missing that it is impractical to solve the bigger problems yet. He has deftly pivoted Open Treatments to focus on one of the simplest problems – counting. He explains how the Chan Zuckerberg Foundation helped him sharpen his focus and eventually fund the work. The result, the Open Treatments Connect project.