Welcome to the official Twitter page of the Minnesota Rare Disease Advisory Council! Click the link and see what we've been up to this last year since becoming an executive branch, non-cabinet state agency in 2021. mnraredisease.org

MCD at Twin Cities Pride. Everyone belongs at the table. We are proud to partner with Disability Hub MN, MN Gov's Council on Developmental Disabilities, Minnesota Rare Disease Advisory Council, Wilderness Inquiry, & MN DHS Deaf and Hard of Hearing Services. Come visit all of us. Details: disability.state.mn.us/events-and-out…

Here for #pride. ❤️🧡💛💚💙💜💗🖤🤍🤎

📢 ONLY 3 DAYS AWAY! RARE Town Hall: An Open Forum for #patients, #caregivers, #providers and allies of the #RareDisease #Community 🗓️ Thu June 29 🕐 6PM (CST) 🖥️ rare-diversity-mn.eventbrite.com See you there! #togetherwecan #RAREmatters

We’re already beginning to prepare for the 2024 legislative session, and we need your help to make another impactful one for people with disabilities! Complete our 2024 Public Policy Survey to tell us what you want to see in legislation next year: forms.office.com/pages/response…

Thank you to everyone who showed up to our listening session! We appreciate all our PAG and the ongoing support. We will continue to work towards our mission as an agency, which is to provide advice on research, diagnosis, treatment, and education related to rare diseases.

New #InflationReductionAct guidance from CMSGov threatens #RareDisease drug development. Check out NORD’s statement on today's finalized guidance on the Medicare Drug Price Negotiation Program: rarediseases.org/final-inflatio…

The Rare Disease Advisory Council is setting up a table with goodies and swag to meet with the community, educate others on what we do, who we help and spread our agency mission to reach as many individuals as possible. *** Stay tuned for the exact dates we will be at our table

Hey you! Are you interested in staying in the "now" with The Minnesota Rare Disease Advisory Council and what our agency is up to? Subscribe to our email for all updates pertaining to meeting notifications, newsletters and upcoming events! scroll down! mnraredisease.org/who-we-serve/

Are you planning to stop by our booth at the State Fair on August 27th? RARE is not RARE, and our agency is making that known! Wear your zebra stripes to show support for the rare disease community. Governor Tim Walz WCCO | CBS News Minnesota

Thank you National Organization for Rare Disorders (NORD) for the stuffed zebras! We gave them out at the MN State Fair as a way to educate the public on rare diseases. A great conversation starter!

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