Completed in 2021, this survey, commissioned by the Advisory Council, provides a platform to advance access for Minnesota patients and families
About the Council
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.
Vision & Mission
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.
The Chloe Barnes Advisory Council on Rare Diseases seeks to be a convener for the diverse stakeholders that are responsible to improve care for the rare disease community and we work to foster communication and collaboration across disciplines. Council duties include developing educational resources, identifying best practices for rare disease care, advising state agencies, and identify barriers to care.