Minnesota

Please join Minnesota Rare Action Network for Rare Disease Day Advocacy Event on March 12, 2019 from 1:00pm-2:00pm at Minnesota State Capitol, Rotunda, 75 Rev Dr Martin Luther King Jr Boulevard, St Paul, MN 55155. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Minnesota.

This is YOUR DAY to make your voice heard & to tell YOUR stories! Let lawmakers know how important good health care is to us! This event is in partnership with the Hemophilia Foundation of Minnesota/Dakotas annual Rally for Bleeding Disorders and Rare Disease Awareness Day at the capitol! There is no cost to participants to attend this event.

REGISTER HERE

Erica Barnes
Minnesota State Ambassador
erica.barnes@rareaction.org

Maria Null
Community Engagement Liaison
maria.null@rareaction.org

Attention Minnesota Advocates!
Want to learn more about the Minnesota Rare Action Network and how you can get involved? Come out and meet your Minnesota State Ambassador at the Southdale Library 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. Please RSVP to Erica Barnes, erica.barnes@rareaction.org

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 third edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.