About – WI Rare

About WI Rare

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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!

Join

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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

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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.

BECOME AN INTERN

Kimberly Haugstad, MBA
President