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 Manager
Robin Jolly
Advocacy Intern
Questions or Comments
Please contact us with any questions or comments.
