October 8, 2026
1 min read

A mother-daughter quest to find fellow members of an ultra-rare genetic community

“Don’t Google,” the pediatric geneticist warned us on a sunny October afternoon in 2020. 

She had just diagnosed our 11-year-old daughter, Maya, with Nicolaides-Baraitser syndrome, a genetic condition so rare there were only 61 cases in the scientific literature. 

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