Concurrent Speaker :
Erica Barnes, MA

Executive Director
Chloe's Fight Rare Disease Foundation

Erica Barnes, MA is a rare disease advocate and the Executive Director of Chloe’s Fight Rare Disease Foundation which she co-founded with her husband following the loss of her daughter Chloe to metachromatic leukodystrophy in 2010. She is also the volunteer State Ambassador in Minnesota leading the Rare Action Network for NORD (National Organization for Rare Disorders). Erica has written numerous articles for national publications on various rare disease topics and is a public speaker. She lives in Hopkins, Minnesota with her husband and two children.


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