January 26, 2024: Rush University Medical Center in Chicago. Rare Disease story about Alec Koujaian who has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC at the age of 20. (Photo by Barbara Johnston/University of Notre Dame)

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January 26, 2024: Rush University Medical Center in Chicago. Rare Disease story about Alec Koujaian who has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC at the age of 20. (Photo by Barbara Johnston/University of Notre Dame)

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