Minnesota Rare Disease Advisory Council

07/29/2025

RDAC is getting excited to join our amazing mentor organization Minnesota Council on Disability at the State Fair! Each year we meet the most amazing people, many with a lived experience related to rare diseases to share. Stop by the booth in the Education building Friday, August 29 between 9am-9pm and grab some zebra ears.

07/21/2025

Wondering what the MN Rare Disease Advisory Council accomplished this legislative session? Does your community have a rare disease policy goal? We want to hear. Register and join us on August 19th. https://docs.google.com/forms/d/e/1FAIpQLSfvErwP_7dFUILPcvj9kr1nDl2XhSKe_2C7lUisyLURWSWhOA/viewform

06/03/2025

Join RDAC as we talk through the impacts of structural barriers to delivering care to patients living with rare diseases and potential policy solutions. Are you a clinician with an example of a structural challenge that you would like to discuss? The ECHO model is built around case discussion, so we would love to hear from you! Contact us at [email protected]. CEs are provided and registration is free. Minnesota Medical Association Minnesota Chapter, American Academy of Pediatrics Minnesota Academy of Family Physicians

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04/03/2025

Thank you, State Representative Robert Bierman for your commitment to the rare disease community.

04/01/2025

We had an amazing turnout for our Advocacy Day prep session last Friday. Huge thank you to EveryLife Foundation for Rare Diseases for co-facilitating and we cannot wait to see you all at the Minnesota Capitol tomorrow!

03/25/2025

Rare Disease Advocacy Day 2025 is a little over a week away!

The Minnesota Rare Disease Advisory Council invites you to make a difference by advocating for those affected by rare diseases. Connect with legislators, engage in meaningful discussions, and be a voice for change.

🗓 Date: Wednesday, April 2, 2025
📍 Location: L’Etoile du Nord Vault Room B15, MN State Capitol
🕐 Schedule:
✅ Legislative Meetings: 1:30 PM – 3:00 PM
✅ Formal Programming: 3:15 PM – 5:30 PM

Let's raise awareness and push for policies that matter! Your voice counts.

📩 RSVP now: [email protected]

03/18/2025

Wondering what MNRDAC is prioritizing this legislative session? This 1 pager gives an overview. If you want to know more reach out to us!