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

Anna Landseadel
Communications Manager

Azi Fanale
Advocacy Intern

I’m a sophomore at UW double majoring in International Studies and Philosophy with a certificate in Global Health. WI Rare sparks my interest in so many ways. As I’ve progressed through the Global health coursework, so many questions have arisen for me around health outcomes and health equity. Additionally, as an aspiring law school applicant, I’m intrigued by the administrative processes and decisions that take place in our Capitol. I’m so excited to learn more about this and more in my time with WI Rare. I’m a firm believer that change starts at the micro level, and that it takes a village. I can’t wait to begin making these changes surrounded by an awesome community!

Madhura Sathyanarayanan
Advocacy Intern

I’m a junior at UW majoring in Neurobiology and pursuing certificates in Health Policy and Genetics. I wanted to intern with WI Rare because I’m passionate about connecting science with people’s lived experiences and learning how advocacy and storytelling can make a difference for those impacted by rare diseases. Through this internship, I hope to strengthen my skills in science communication, better understand how patient stories influence policy and outreach, and contribute in a meaningful way to the rare disease community.

Hana Chow
Advocacy Intern

I’m a senior at UW majoring in Neurobiology and Psychology with a certificate in Health Policy. The mission of WI Rare aligns perfectly with my personal and academic interests. Being able to learn more about rare diseases during my time at UW-Madison sparked my interest in the rare disease community and lead me to WI Rare. As an aspiring physician, I am hoping to gain skills to advocate for my patients and the wider group of individuals impacted by rare diseases. I am excited to gain more experience at the intersection of legislation and innovative healthcare for an underserved and understudied population.