Wisconsin

Danyelle Sun

Wisconsin State Ambassador

Wisconsin Rare Disease Day Virtual Event

Thursday, February 25, 2021
12:00pm – 1:30pm CST

Wisconsin Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Wisconsin legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could address the needs of those living with a rare disease in Wisconsin by providing stakeholders an opportunity to make formal recommendations to state leaders about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures.

REGISTER HERE

Wisconsin COVID-19 Resources & Information

State Resource Page

The Wisconsin Department of Health Services has created this helpful resource website in response to COVID-19.

https://www.dhs.wisconsin.gov/covid-19/index.htm

What's Happening Now?

Please join the Wisconsin Rare Action Network for our bi-monthly virtual rare discussion groups. Join rare advocates to discuss challenges rare patients are facing in Wisconsin and connect with others. Below are the dates and registration links for the meetings.
Tuesday, November 17, 2020 at 6:00pm CST Register for the 11/17 meeting here

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Wisconsin’s Rare Action Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in Wisconsin.

Wisconsin needs your help!
Utilize these Rare Action resources to put rare diseases on the map in your state. If you need further assistance or have additional questions on how to take action in Wisconsin, please contact your State Ambassador, Danyelle Sun.

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State Report Card

In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.