About the Council

MN governor Tim Walz with the MN Rare Disease Advisory Council

History

The Chloe Barnes Advisory Council on Rare Diseases 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 Chloe Barnes Advisory Council on Rare Diseases 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 Chloe Barnes Advisory Council on Rare Diseases'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.

Leadership

Professional headshot of council member Dr. Jakub Tolar
Dr. Jakub Tolar
Chair
Dean, University of Minnesota Medical School
Professional headshot of council member Erica Barnes, MA ccc-SLP
Erica Barnes, MA ccc-SLP
Administrator
University of Minnesota

Council Members

Professional headshot of council member Nicole Brown, MSN,PHN
Nicole Brown, MSN, PHN
Department of Health
Professional headshot of council member Rep. Alice Mann, MD
Rep. Alice Mann, MD
Legislator, MN House
Professional headshot of Rep. Tony Albright
Rep. Tony Albright
Legislator, MN House
Professional headshot of council member Sen. Matt Klein, MD
Sen. Matt Klein, MD
Legislator, MN Senate
Professional headshot of council member Sen. Scott Jensen, MD
Sen. Scott Jensen, MD
Legislator, MN Senate
Professional headshot of council member Tim Schacker, MD
Tim Schacker, MD
University of Minnesota
Professional headshot of council member Lisa Shemmenti, MD
Lisa Shemmenti, MD
The Mayo Clinic
Professional headshot of council member Karl Nelsen, PA-C MS
Karl Nelsen, PA-C MS
Patient Advocate
Professional headshot of council member Rae Blaylark
Rae Blaylark
Patient Advocate
image of Karri LaFond
Karri LaFond
Patient Advocate
Professional headshot of council member Arthur Beisang, MD
Arthur Beisang, MD
Gillette Children’s
Professional headshot of council member Sheldon Berkowitz, MD, FAAP
Sheldon Berkowitz, MD, FAAP
Children’s Minnesota
Professional headshot of council member Kris Ann Schultz, MD
Kris Ann Schultz, MD
Children’s Minnesota
Professional headshot of council member Kerry Hansen, RN
Kerry Hansen, RN
M Health
Professional headshot of council member Abigail Miller, MD
Abigail Miller, MD
Preferred One
image of Tom Blissenbach, RPh, MS
Tom Blissenbach, RPh, MS
M Health
Professional headshot of council member Soraya Beiraghi, DDS, MSD, MS
Soraya Beiraghi, DDS, MSD, MS
University of Minnesota
Professional headshot of council member Barbara Joers
Barbara Joers
Gillette Children’s
Professional headshot of council member Srijoy Mahapatra, MD
Srijoy Mahapatra, MD
M Health
Professional headshot of council member Lee A. Jones
Lee A. Jones
Rebiotix
Professional headshot of council member Amy Gaviglio, MS-CGC
Amy Gaviglio, MS-CGC
Center for Disease Control
Professional headshot of council member Janet Ziegler, MSW, LICSW
Janet Ziegler, MSW, LICSW
M Health
Professional headshot of council member Paul Orchard, MD
Paul Orchard, MD
Children’s Masonic
Professional headshot of council member Jackie Foster, MPH, RN, OCN
Jackie Foster, MPH, RN, OCN
Be the Match Foundation
Female doctor being friendly and talking to a mom and her daughter.

Our Function

The Chloe Barnes Advisory Council on Rare Diseases 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 Council holds quarterly meetings that are open to the public. All are welcome and encouraged to attend. View past meeting minutes.

Past Meetings        Upcoming Meetings              
January 31, 2020                 April 24, 2020 (9:30-11:30 a.m.)
September 25, 2019