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.

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Our Aim

As a collaborative alliance, we work together as a families, clinicians, researchers, businesses, and allies interested in the needs of rare disease in Wisconsin.

We specifically:

  1. Unite WI rare disease stakeholders, organizations, and individuals
  2. Collect and understand WI rare disease priority needs
  3. Advance WI rare disease education and outreach
  4. Engage and align WI stakeholders, experts and decision makers on rare disease priorities and policies (legislation, regulatory, processes and systems)
  5. Prepare WI for the science and care advancements that will benefit rare disease patients
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Advisory Council

Our advisory council is made up of rare disease expert leaders who are dedicated to improving the diagnosis, care and treatment of rare disease Wisconsin families. If you are interested in being a member of our Advisory Council, please click below.
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Advisory Council

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Advisory Council

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Advisory Council

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Advisory Council

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Advisory Council

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Advisory Council

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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

Josh Argall
Board Member

Sheldon Garrison

Sheldon Garrison, PhD
Board Member

Kimberly Haugstad, CEO

Kimberly Haugstad, MBA
President

Lani Knutson

Lani Knutson
Board Member

Katie Moureau

Katie Moureau
Board Member

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Board Member

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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, CEO

Kimberly Haugstad, MBA
President

Anna Landseadel

Anna Landseadel
Communications Manager

Xinya

Xinyu Liu
Advocacy Intern

Jonathan

Jonathan Haugstad
Advocacy Intern

Ariana

Ariana Halaska
Advocacy Intern

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Tiena Johnson
Advocacy Intern

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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.

  1. Communication and Education
  2. Research and Data
  3. Rare Education
  4. Advocacy and Outreach

We welcome your support!

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Questions or Comments

Please contact us with any questions or comments.
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