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
- Olivia Chiarelli, Groups: Operations Manager
Governing Council
- Maureen Alderman, Groups: Patient Representative Groups: Executive Sub Committee
- Soraya Beiraghi, DDS, MSD, MS, Groups: Dentist
- Arthur Beisang, MD, Groups: Physician with expertise in caring for children
- Sheldon Berkowitz, MD, FAAP, Groups: Physician with expertise in caring for children Groups: Policy Sub Committee
- Rae Blaylark, Groups: Patient Advocate Groups: Policy Sub Committee
- Nicole Brown, MSN, RN, Groups: Ex-Officio
- Senator Julia Coleman, Groups: Legislative Member
- Angela Cowan, Groups: Social Worker
- Jackie Foster, MPH, RN, OCN, Groups: Non-profit serving individuals with rare diseases
- 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
- Abigail Miller, MD, Groups: Payer
- Rep Tom Murphy, Groups: Legislative Member
- Karl Nelsen, PA- C, Groups: Physician Assistant Groups: Executive Sub Committee, Policy Sub Committee
- Paul Orchard, MD, Groups: Member Professor
- Lisa A. Schimmenti, M.D., Groups: Ex-Officio Member Groups: Policy Sub Committee
- Kris Ann Schultz, MID, Groups: Physician
- Dawn Stenstrom, Groups: Industry Representative Groups: Policy Sub Committee
- David Tilstra, MD, Groups: Hospital Administrator 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.
