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Susannah Fox

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Amanda Hess

Rare Disease in the NYT

April 23, 2025 By Susannah Fox 7 Comments

Ultrasound of a baby

My phone started blowing up with texts from friends and family members yesterday morning, alerting me to a New York Times magazine cover story by Amanda Hess, “My Son Has a Rare Syndrome. So I Turned to the Internet” (gift link). Hess writes beautifully about her experience being dropped into the medical maze and her […]

Filed Under: Networkers, peer-to-peer health care, Seekers Tagged With: Amanda Hess, New York Times, Rare Disease

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