ERICA BARNES

Erica Barnes is the current GLIA-CTN Advocacy Committee Chair, and also serves as executive director of the Minnesota Rare Disease Advisory Council. In 2010, when Erica tragically lost her young daughter, Chloe, to metachromatic leukodystrophy (MLD), a rare disease, Erica found herself in the role of rare disease advocate. She has been active in the advocacy community for over a dozen years, championing policies related to timely diagnosis, appropriate care, and effective treatments.

Erica began her professional career as a speech-language pathologist in the healthcare setting. Following the death of her daughter, Chloe, in 2010 she co-founded Chloe’s Fight Rare Disease Foundation with her husband Philip. Through her advocacy work she has represented the National Organization for Rare Disorders (NORD) as a Minnesota state ambassador, has provided public testimony at the federal level in support of newborn screening, and frequently speaks at national conferences and contributes to publications focused on rare diseases.