2025 Year-End Survey

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2025 Year-End Survey

Thank you for being part of WI Rare this year!

As we wrap up another season of growth, connection, and advocacy, we’d love to hear about your experiences. Your insights help us understand what’s working, what needs strengthening, and how we can continue supporting you and the broader WI Rare community in the year ahead.
This short survey should only take a few minutes, and your honest feedback is incredibly valuable.

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About You

All responses remain confidential

Your Name

First

Last

I identify as a: *check all that apply *

Patient / Caregiver
Healthcare Provider / Researcher
Friend of Rare
Nonprofit
Government
Legislator
Corporate
Other

Your Experience With WI Rare This Year

Which WI Rare activities did you engage with? *check all that apply

Join Webinars / Zoom Meetings
Follow WI Rare newsletter
Follow / share social media
Participate on WI Rare Working Group / Committee
Attend WI Rare Disease Advocacy Day at Capitol
Participate in WI Rare Advocacy Masterclass conducted thru Patient’s Rising
Advocacy / Legislative efforts (visit, call, email legislators)
Attend other in-person meetups
Contribute as a Board Member / Advisory Member
None of the above
Other

How valuable were WI Rare activities for you as an advocate this year?

Selected Value: 0

0 = none at all, 5 = very valuable

Impact & Support

Did WI Rare provide you with a sense of belonging and connectivity to rare disease advocacy in WI this year? *

Yes
Somewhat
Not Really
No

Any Comments?

What can WI Rare do to be more useful to you in your advocacy efforts?

Priorities for 2026

Consider the rare disease advocacy journey from diagnosis, care, treatment, research, and future cures. Think about 2026. What issues are the most important to you?

(examples: access to genetic testing, affording prescriptions, threats to waivers, clinical trials…)

Communication

Which communication channels work best for you? *check all that apply

Email
Facebook
Instagram
Website
Online calls / Webinars
Text
In-person meetings
Other

Final Thoughts

share WI how

What else would you like WI Rare to know as we head into 2026?

Would you like to volunteer or get more involved?

Yes
Maybe
Not Right Now

If yes / maybe, please share how you'd like to help.

Be sure you shared your name and email above so we can reach out to you!

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Connect

CONTACT FORM

N85 W16110 Appleton Ave # 158 Menomonee Falls, WI 53051