The Chloe Barnes Advisory Council on Rare Diseases is a result of the grassroots efforts of Minnesota patients and families whose lives have been effected by rare disease. Rare patient advocates recognized the need to develop a systematic approach to address the needs of the rare disease community at the state level. The Council was created following the passage of bill HF684/SF973 in the 2019 legislative session.

The Chloe Barnes Advisory Council on Rare Diseases envisions a world where every Minnesota citizen living with a rare disease has access to a timely diagnosis, comprehensive care, and an effective treatment. Our mission is to provide advice on research, diagnosis, treatment, and education related to rare diseases.

The Chloe Barnes Advisory Council on Rare Diseases's top priority is improved care for the 1 in 10 Minnesotans living with a rare disease. We believe that this can be achieved through deepening our understanding of the common barriers unique to the rare disease community, increasing access to care/quality of care, reducing time to diagnosis/misdiagnosis, and accelerating research.