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The Minnesota Rare Disease Advisory Council (MNRDAC) provides educational resources and support tools for the rare disease community, policymakers, and providers to address barriers to care. We are continually gathering resources relating to diagnosis, access to treatment, services, and education. If you have a rare disease resource suggestion, please contact us: [email protected].

Actual patient photos used with permission from Brave Souls Photography

Reports & Publications

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MNRDAC Reports

2023 Annual Report

RDAC was active in 2023, seeking to operationalize our newly-formed agency, working with the Legislature to pass bills, improve policies, increase representation in state agencies, and build collaborations with community partners. Read our 2023 Annual Report for details.

MNRDAC Reports

Patient Advocacy Group Listening Session: Insight Report

The need for a collective voice for the rare disease community at the state government level catalyzed the Council to host regular patient advocacy group listening sessions to better understand the community’s perspective. This report summarizes the June 2023 listening session.

Cover for report: Rare disease patient healthcare access survey 2020-2021

Other Reports & Publications

Rare Disease Patient Survey-Preliminary Qualitative Report

In this companion to the quantitative results reported in the Council’s 2020 healthcare Access Study on access barriers to care across rare diseases, participants were asked to share their three most significant barriers (experiences that have felt difficult or frustrating) and facilitators to diagnosis, management or treatment of their ( experiences that felt positive or helpful).

Public Comment and Letters of Support

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Letter of Support

Providing Realistic Opportunity to Equal and Comparable Treatment (“PROTECT Rare”) Act

The bill will build on existing criteria for medically necessary care so that Medicare and Medicaid will be able to consider clinical guidelines and peer-reviewed literature to assess coverage of rare disease treatments. Importantly, the bill does not provide ‘special treatment’ for rare diseases; rather, it levels the playing field for access to those living with more common conditions.

Thumbnail image representing the cover of a letter of support

Letter of Support

Minnesota State Legislation SF 2744 that appoints the Council to the advisory committee of the Prescription Drug Affordability Board

The development and availability of transformative treatments for rare diseases poses both an incredible opportunity and an enormous challenge for the state of Minnesota. RDAC inclusion on the PDAB ensures that rare disease drug development and research is not restricted nor held to the same standards as common diseases while at the same time sustainable reimbursement models that balance value and cost are considered.

Patient Resources

These are just a few of the many rare disease resources available. If you have a rare disease resource suggestion, please contact us at [email protected].

Provider Resources

Doctors are commonly taught ‘when you hear hoofbeats, think horses not zebras,’ which suggests that they should first consider a more common diagnosis. MNRDAC exists to support the medical community when the hoofbeats belong to a zebra. MNRDAC collaborates with state medical schools, schools of public health, and Minnesota hospitals that provide care to persons with a rare disease and shares resources on research, diagnosis, treatment, and education relating to rare diseases.

If you have a rare disease resource suggestion, please contact us at [email protected].


Learning Opportunity

Transition of Care Project ECHO

The Children and Youth with Special Health Needs Health Care Transition Learning Collaborative (HCT LC) is a groundbreaking project aimed at advancing pediatric to adult health care transition for children and youth with special health needs. The HCT LC is leveraging the innovative Project ECHO learning model, an “all teach, all learn” approach that brings together young adults, parents, clinicians, payers, advocacy groups and anyone interested in health care transitions from throughout Minnesota for 8-10 virtual learning opportunities and multidisciplinary discussions. Each of the sessions will have a brief didactic presentation followed by a case presentation from the participants every session. Find more information and joining instructions here.

An assortment of photos with white borders. The photos are of rare disease patients, children.