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MNRDAC Reports

2023 Annual Report

MNRDAC 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.

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).

MNRDAC Reports

2023 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.

MNRDAC Reports

2020 Rare Disease Frontline Provider Survey Key Takeaways

There are over 7,000 rare diseases in existence with over 25 million patients affected. Yet, healthcare access and quality of life are elusive to many rare disease patients, and only 5% of rare disease patients have an approved treatment option.

Rare isn't so rare infographic cover image

MNRDAC Reports

Infographic: Rare isn’t so rare

Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the U.S. is considered rare. Learn more in this infographic.

Cover image of our 2022 Annual Report

MNRDAC Reports

2022 Annual Report

Summary of activities undertaken by the Council for Federal Fiscal Year 2022 – Created December 2022