Rare is not rare.
The Minnesota Rare Disease Advisory Council advocates for the one in 10 Minnesotans affected by rare diseases. Our mission is to provide advice on research, diagnosis, treatment, and education related to rare diseases.
History
The Minnesota Rare Disease Advisory Council was formed 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, and transitioned to an executive branch state agency in July 2022. It could not have happened without grassroots efforts from our community.
Who We Serve
The Minnesota Rare Disease Advisory Council works with state agencies, research leaders, health care systems and patient advocacy groups to improve the journey for rare disease patients. We envision a world where every Minnesota citizen living with a rare disease has access to a timely diagnosis, comprehensive care, and an effective treatment.
Priorities
Our 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 barriers unique to the rare disease community, increasing access to quality of care, reducing time to diagnosis/misdiagnosis, and accelerating research.
Actual patient photos used with permission from Brave Souls Photography
Coming Up
The Minnesota Rare Disease Advisory Council holds quarterly meetings that are open to the public. All are welcome and encouraged to attend. See the full calendar
The Council
Council duties include developing educational resources, identifying best practices for rare disease care, advising state agencies, and identifying barriers to care. See the full council
Erica Barnes is the Executive Director of the Minnesota Rare Disease Advisory Council and a well-respected health care innovator for the rare disease community. 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. Erica has spent the past 12 years in the advocacy community, championing policies related to timely diagnosis, appropriate care, and effective treatments.
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