Healthcare Access survey now published!

Completed in 2021, this survey, commissioned by the Minnesota Rare Disease Advisory Council, provides a platform to advance access for Minnesota patients and families

About the Council

MN governor Tim Walz with the MN Rare Disease Advisory Council

History

The Minnesota Rare Disease Advisory Council 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.

Doctor pitching an idea to a group of other doctors

Vision & Mission

The Minnesota Rare Disease Advisory Council 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.

Doctor holding an Ipad talking to a group of other doctors.

Priorities

The Minnesota Rare Disease Advisory Council'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.

Council Members

Professional headshot of council member Erica Barnes, MA ccc-SLP
Erica Barnes, MA ccc-SLP
Administrator
University of Minnesota
Professional headshot of council member Amy Gaviglio, MS-CGC
Amy Gaviglio, MS-CGC
Member
Genetics Consultant
image of Tom Blissenbach, RPh, MS
Tom Blissenbach, RPh, MS
Pharmacist
Retired/ Consultant
Professional headshot of council member Abigail Miller, MD
Abigail Miller, MD
Cost Work Group Lead
Chief Medical Officer and SVP, PreferredOne
Professional headshot of council member Karl Nelsen, PA-C MS
Karl Nelsen, PA-C MS
Patient Advocate
Physician Assistant
Professional headshot of council member Jackie Foster, MPH, RN, OCN
Jackie Foster, MPH, RN, OCN
Member
Be the Match Foundation
Professional headshot of council member Paul Orchard, MD
Paul Orchard, MD
Member
Professsor, Dept. of Pediatrics
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Rep. Kelly Morrison
Member
MN House of Representatives
Professional headshot of council member Nicole Brown, MSN,PHN
Nicole Brown, MSN, RN
Member
Department of Health
Professional headshot of Rep. Tony Albright
Rep. Tony Albright
Member
Legislator, MN House
Professional headshot of council member Arthur Beisang, MD
Arthur Beisang, MD
Member
Gillette Children’s
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Lisa A. Schimmenti, M.D.
Ad Hoc Member
Mayo Clinic
Professional headshot of council member Sheldon Berkowitz, MD, FAAP
Sheldon Berkowitz, MD, FAAP
Children’s Minnesota
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David Tilstra
Member
CentraCare
Professional headshot of council member Barbara Joers
Barbara Joers
Member
Gillette Children’s
Professional headshot of council member Kerry Hansen, RN
Kerry Hansen, RN
M Health
Professional headshot of council member Kris Ann Schultz, MD
Kris Ann Schultz, MD
Member
Children’s Minnesota
Professional headshot of council member Rae Blaylark
Rae Blaylark
Member
Patient Advocate
Professional headshot of council member Sen. Matt Klein, MD
Sen. Matt Klein, MD
Member
Legislator, MN Senate
Professional headshot of council member Soraya Beiraghi, DDS, MSD, MS
Soraya Beiraghi, DDS, MSD, MS
Member
University of Minnesota
Professional headshot of council member Tim Schacker, MD
Tim Schacker, MD
Member
University of Minnesota
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Senator Julia Coleman
Member
Senator
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Maureen Alderman
Patient Representative
General Mills
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Dawn Stenstrom
Industry Representative
Boston Scientific
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Angela Cowan
Social Worker
Confluence Therapy
Female doctor being friendly and talking to a mom and her daughter.

Our Function

The Minnesota Rare Disease Advisory Council 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.

A group of doctors all sitting together in a circle talking to each other.

Our Meetings

The Minnesota Rare Disease Advisory Council holds quarterly meetings that are open to the public. All are welcome and encouraged to attend. Click here to view upcoming meetings and past meeting minutes.