All Reports & Publications
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.
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
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.
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.
MNRDAC Reports
Infographic for Providers: 2020 Rare Disease Health Care Access Study
Even when compared to adults with common chronic diseases, adults in Minnesota with rare diseases had significantly worse stigma, physical function, fatigue, and depression, and marginally worse anxiety.
MNRDAC Reports
Infographic for Patients & Families: 2020 Rare Diseases Heath Care Access Study
Even when compared to adults with common chronic diseases, adults in Minnesota with rare diseases had significantly worse stigma, physical function, fatigue, and depression, and marginally worse anxiety.
MNRDAC Reports
2022 Annual Report
Summary of activities undertaken by the Council for Federal Fiscal Year 2022 – Created December 2022
MNRDAC Publications
MN Physician, Treating Rare Disease – New legislation brings hope
The MNRDAC is committed to a community-driven mindset. As we shape our policies, we will always seek insight from people with the lived experience in rare diseases.