Breathing through barriers: Lived experience, innovation, and the future of Alpha-1 care

When a disease runs in your family, you don’t learn about it from textbooks. You learn about it at funerals, in hospital beds, and emergency rooms. My family has lost multiple members to Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare genetic disorder with a deceptively simple origin: a misfolded protein. We didn’t know what it was until my uncle’s misdiagnosis was finally corrected by a well-informed doctor who happened to attend a timely medical conference. That diagnosis saved lives, ours included.

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