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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

Governing Council

  • Maureen Alderman, Groups: Rare Disease Patient/Caregiver Groups: Executive Sub Committee
  • Soraya Beiraghi, DDS, MSD, MS, Groups: Dentist
  • Arthur Beisang, MD, Groups: Physician (Pediatrics)
  • Rae Blaylark, Groups: Rare Disease Patient/Caregiver Groups: Policy Sub Committee
  • Nicole Brown, MSN, RN, Groups: Ex-Officio
  • Sen. Julia Coleman, Groups: Legislative Member
  • Angela Cowan, ICSW, Groups: Social Worker
  • Jackie Foster, MPH, RN, OCN, Groups: Rare Disease Non-profit
  • Amy Gaviglio, MS CGC, Groups: Genetic Counselor Groups: Executive Sub Committee, Policy Sub Committee
  • Kerry Hansen, RN, Groups: Nurse
  • Barbara Joers, Groups: Hospital Administrator Groups: Policy Sub Committee
  • Sen. Kelly Morrison, Groups: Legislative Member
  • Rep. Tom Murphy, Groups: Legislative Member
  • Karl Nelsen, PA-C, Groups: Rare Disease Patient/Caregiver Groups: Executive Sub Committee, Policy Sub Committee
  • Paul Orchard, MD, Groups: Researcher
  • Nishitha Pillar, MD, Groups: Ex-Officio
  • Rep. Liz Reyer, Groups: Legislative Member
  • Lisa A. Schimmenti, M.D., Groups: Ex-Officio Groups: Policy Sub Committee
  • Kris Ann Schultz, MD, Groups: Physician
  • Dawn Stenstrom, Groups: Industry Groups: Policy Sub Committee
  • David Tilstra, MD, Groups: Hospital Administrator (Greater Minnesota) Groups: Executive Sub Committee

Partner Agency

The Minnesota Council on Disability is providing mentorship and support to the Minnesota Rare Disease Advisory Council (RDAC), 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.

Scattered photos on watercolor background. Front most photo shows young boy smiling at camera, holding his Beads of Courage