Minnesota

Please join us for Minnesota Rare Disease Day at the University of Minnesota McNamara Alumni Center, 200 SE Oak St, Minneapolis, MN 55455 on  February 28, 2020 from  9:00 am – 2:30 pm. “The Rare Disease Treatment Approval Process: Balancing Gold Standard Evidence with Patient-Centered Flexibility” with  keynote: Sarah Wicks, JD, MPH.

Erica Barnes
Minnesota State Ambassador
[email protected]

Maria Null
Community Engagement Liaison
[email protected]

Please join Minnesota Rare Action Network and Hemophilia Foundation of Minnesota/Dakotas for a Bleeding Disorders and Rare Disease Awareness Day at the capitol on March 20, 2020 at 1:00pm at the Minnesota State Capitol, capitol rotunda, 75 Rev. Dr. Martin Luther King Jr Blvd, St. Paul, MN 55155. Make your voice heard & tell YOUR story! Let lawmakers know how important good health care is for everyone!  Advocacy 101 Workshop will be from 11:00 a.m. – 12:30 p.m. in room 316. To RSVP for the rally, workshop or both at please email [email protected].

Attention Minnesota Advocates!
Want to learn more about the Minnesota Rare Action Network and how you can get involved? Join members of the Rare Action Network for our monthly virtual meeting the last Thursday of every month from 7:00 pm to 8:30 pm! It is a great time to network with other advocates and discuss issues facing the Minnesota Rare Disease community. Information on how to access the virtual platform is sent out via email each month. To access virtual meetings, join the Rare Action Network by selecting the orange ‘Join RAN’ button in the top right-hand corner of this page. Please contact Maria Null, Community Engagement Liaison to RSVP for meetings [email protected]

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

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.