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March 28, 2019 27 mins
From navigating her son Case’s rare diagnosis with the help of her own mother (and a medical diagnosis television show) to being honored at a global summit meeting for patient advocates almost a decade later, Melissa Hogan’s story is raw and riveting. She describes the reality of her son living with mucopolysaccaridosis II, or Hunter syndrome, as “beautifully heartbreaking”— a sentiment that rings true for so many parents raising children with rare diseases.
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