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Lobbyist Fights for Cure in Daughter's Rare Disorder

2/20/2025

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Summary

Story summary

Joe Lang, a passionate lobbyist from Sacramento, is on a heartfelt mission to find a cure for his daughter’s rare neurodevelopmental disorder, Jordan’s Syndrome. Through his nonprofit, Jordan’s Guardian Angels, he partners with Shionogi to advance a clinical trial for Zatolmilast, which has recently received Rare Pediatric Disease Designation from the FDA, offering hope for better treatment options.

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Story summary

Joe Lang, a passionate lobbyist from Sacramento, is on a heartfelt mission to find a cure for his daughter’s rare neurodevelopmental disorder, Jordan’s Syndrome. Through his nonprofit, Jordan’s Guardian Angels, he partners with Shionogi to advance a clinical trial for Zatolmilast, which has recently received Rare Pediatric Disease Designation from the FDA, offering hope for better treatment options.