About WI Rare
About Us
Our Vision: Every person with a rare disease in Wisconsin has the best health outcome and quality of life possible.
Mission: The Wisconsin Rare Disease Alliance educates and advocates for advancements that improve the diagnosis, care and treatment of people with rare diseases in Wisconsin.
Working Groups
To accomplish our work, we have formed multiple working groups.
Please contact us directly if interested in serving in one of these groups.
- Communication
- Research
- Education
- Advocacy
We welcome your support!
Our Aim
As a collaborative alliance, we work together as families, clinicians, researchers, businesses, and allies interested in the needs of rare disease in Wisconsin.
We specifically:
- Unite WI rare disease stakeholders, organizations, and individuals
- Collect and understand WI rare disease priority needs
- Advance WI rare disease education and outreach
- Engage and align WI stakeholders, experts and decision makers on rare disease priorities and policies (legislation, regulatory, processes and systems)
- Prepare WI for the science and care advancements that will benefit rare disease patients
Board of Directors
Our board of directors is made up of patients and caregiver advocates, health providers, researchers and other experts dedicated to building a coalition focused on advancing the needs of rare diseases in Wisconsin. Contact us if you are interested in being on our board.
Josh Argall
Board Member
Sheldon Garrison, PhD
Board Member
Kimberly Haugstad, MBA
President
Lani Knutson
Board Member
Katie Moureau
Board Member
Board Member
Our Team
Wisconsin Rare Disease Alliance is committed to encouraging future advocacy and policy makers in advancing the needs of our rare disease community. If you live in Wisconsin and are interested in interning for WI Rare, please click below.
Kimberly Haugstad, MBA
President
Anna Landseadel
Communications Director
Jenna Bergmanis
Advocacy Intern
Summer 2026, Spring 2026
Neurobiology
Ava Carfagna
Advocacy Intern
Summer 2026
Biology
Almira Darmawan
Advocacy Intern
Summer 2026
Biochemistry
Madison Griepentrog
Advocacy Intern
Summer 2026
Global Health, Conservation Biology & Environmental Studies
Maeve Kuzma
Advocacy Intern
Summer 2026
Biology
Heidi Lillegard
Advocacy Intern
Summer 2026
Political Science, Public Policy
Ava Pelz
Advocacy Intern
Summer 2026
Human Development & Family Studies and Sociology
Victoria Petrinksi
Advocacy Intern
Summer 2026
Microbiology & Global Health
Sreya Ramar
Advocacy Intern
Summer 2026
Global Health
Madeline Wegleitner
Advocacy Intern
Summer 2026
Biology and Global Health
Past Interns
Jonathan Haugstad
Summer 2026 (Fellow) Spring 2026(Fellow) Fall 2025 (Fellow)
Summer 2025 & 2024
Degree: Statistics & Economics
Hana Chow
Spring 2026 Fall 2025
Neurobiology and Psychology
Azi Fanale
Spring 2026, Fall 2025
International Studies and Philosophy
Katelyn Jacobs
Spring 2026
Pre-Medical
Ellie Knutson
Spring 2026
Global Health
Talia Lunken
Spring 2026
Political Science and Sociology
Madhura Sathyanarayanan
Spring 2026, Fall 2025
Neurobiology
Vanessa Sosnoski
Spring 2026
International Studies and Political Science
Margaret Tate
Spring 2026
Economics and Political Science
Daniela Blumstein
Spring 2026 Summer 2025
Degree: Genetic Counselor
Faith Smith
Summer 2025
Degree: Genetic Counselor
Robin Jolly
Spring 2025
Degree: Global Health
Melissa Hayden
Fall 2024
Degree: Genetic Counselor
Hannah Lee
Fall 2024
Degree: Genetic Counselor
Ariana Halaska
Summer 2024
Degree: Global Health
Xinyu Liu
Summer 2024
Degree: Economics
Tiena Johnson
Summer 2024
Degree: Social Work
Sarah Phelan
Spring 2024
Degree: Rehabilitation Psychology
Kaitlyn Jigalin
Spring 2024
Degree: Psychology
Our Supporters
Wisconsin Rare partners can be found on our RareRising's Supporter page.
Questions or Comments
Please contact us with any questions or comments.
