Who We Are
The Minnesota Rare Disease Advisory Council is an executive branch, non-cabinet agency tasked with advocating for improved care for the 1 in 10 Minnesotans living with a rare disease. The council is a cross-sector and geographically diverse group of governor-appointed council members and staff. Our primary stakeholders are the Governor, Legislature, state agencies, rare disease patient organizations, and, foremost, citizens.
Actual patient photos used with permission from family
Agency Staff
- Erica Barnes, MA, CCC-SLP, Groups: Executive Director
- Julie Olson, Groups: Operations Manager (no vote)
Governing Council
- Maureen Alderman, Groups: Rare Disease Patient/Caregiver Groups: Executive Sub Committee
- Dr. Arthur Beisang, MD, Groups: Physician
- Rae Blaylark, Groups: Rare Disease Patient/Caregiver Groups: Policy Sub Committee
- Nicole Brown, MSN, RN, Groups: Commissioner of Health or Designee (ex officio nonvoting member)
- Sen. Julia Coleman, Groups: Legislative appointee
- Angela Cowen, ICSW, Groups: Social Worker
- Dan Endreson, Groups: Health Plan Company Representative
- Jackie Foster, MPH, RN, OCN, Groups: Rare Disease Patient Organization
- Kerry Hansen, RN, Groups: Nurse or Advanced Practice Nurse
- Barbara Joers, Groups: Hospital Administrator (or designee) Groups: Policy Sub Committee
- Dr. Laura Lambert, Groups: Researcher
- Dr. Elizabeth Lando-King, Groups: Rare Disease Patient/Caregiver (Rural Minnesota Resident)
- Alexandra Mohror, Groups: Genetic Counselor
- Rep. Tom Murphy, Groups: Legislative appointee
- Dr. Paul Orchard, MD, Groups: Physician
- Dr. Paul Peterson, Groups: Dentist
- Nishitha Pillai, MD, Groups: Representative of the University of MN Medical School (ex officio, nonvoting member)
- Rep. Liz Reyer, Groups: Legislative appointee
- Lisa A. Schimmenti, M.D., Groups: Representative of the Mayo Medical School (ex officio nonvoting member) Groups: Policy Sub Committee
- Richard Schirber, Jr., Groups: Member with Additional Identified Areas of Expertise
- Sofia Shrestha, Groups: Pharmacist
- Dr. Douglas Smith, Groups: Physician
- Dawn Stenstrom, Groups: Biotechnology Industry Representative Groups: Policy Sub Committee
- David Tilstra, MD, Groups: Chair, Hospital Administrator (or designee) Groups: Executive Sub Committee
Partner Agency
The Minnesota Council on Disability is providing mentorship and support to the Minnesota Rare Disease Advisory Council (MNRDAC), which was legislatively established in July 1, 2022.
For more information, visit Minnesota Council on Disability.
Apply for Council Positions
To apply, please go to the Secretary of State website and search the Rare Disease Advisory Council.
