2027 WI Advocacy Priorities

What are the top 2-3 challenges your family faces living with a rare disease in WI right now?

If you could change one policy or system in WI to make life easier for your family living with rare disease, what would it be and why?

Which of these rare disease topics are the most urgent to you?

Access to diagnosis
Access to care (including specialists)
Access to treatment (medication, therapy, devices, etc.)
Future research
Insurance (cost, access, coverage, etc.)
School/work accommodations

Tell us more about your most urgent issues.

Age of person(s) with rare disease in the household

Sharing your address helps us build a strong statewide network of rare disease families. Our goal is to connect with at least two families in every legislative district so lawmakers can hear directly from their own constituents when it matters most. If you prefer to remain anonymous, we completely respect that choice.

* Your privacy matters to us. WI Rare Disease Alliance will not share or sell your contact information. Any information you provide will be used only by WI Rare to communicate with you and support our statewide advocacy efforts.

Name

First

Last

are rare person(s)

Email

Phone

Address

Address Line 1

Address Line 2

City

State

Zip Code

Any additional comments?

Thank you so much for your willingness to provide your voice and input and be a part of Wisconsin Rare. Our coalition is stronger working together. You are appreciated.

Building Our Collective 2027 WI Advocacy Priorities

Thank you so much for your willingness to provide your voice and input and be a part of Wisconsin Rare. Our coalition is stronger working together. You are appreciated.

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