Chapel Hill family starts nonprofit after twin daughters diagnosed with rare disease

A father and mother in Chapel Hill are sharing their painful family story to raise awareness about a rare disease.

It’s a journey that began with unimaginable grief but led to something unprecedented — a first of its kind drug trial at UNC.

Back in 2017, the lives of the Kahn family – David, Karen, and their twin daughters Amelia and Makenzie – changed forever in a doctor’s office just before the girls’ 7th birthday…

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