Episode Details

FDA Approves New Drug for Rare Hunter Syndrome: A Breakthrough for Atlas and Families

This episode highlights the FDAs accelerated approval of AVLAYAH, a new drug for Hunter syndrome, a rare condition affecting fewer than 500 people in the US. The approval comes after intense advocacy from the Neuerburg family, whose son Atlas was diagnosed at 18 months. With no approved treatment in 20 years, the family teamed up with Congresswoman Sharice Davids to speed up the process. Hunter syndrome causes the body to lose essential skills and has a life expectancy of 10-20 years. Early results show Atlas hitting normal milestones after starting the enzyme therapy, offering hope for families and proving the power of family voices and representation.

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