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Losing Our Way In A Rare Disease Diagnostic Odyssey
1Kara A. Ayik (karaayik@msn.com) writes about rare disease life and is a coauthor of a children's book along with her son Evren. She is currently a lecturer at the University of California Merced. The physicians' initials have been changed in this essay to protect their privacy. To access the author's disclosures, click on the Details tab of the article online.
Health Affairs (Project Hope)
|March 4, 2024
Abstract:
A mother shares the story of her son's rare disease diagnostic journey and how providers failed them both along the way.

