Request to Governor Dayton: Rare Disease Day Minnesota

January 14, 2014

Dear Governor Dayton:

I am writing to ask you to declare that February 28, 2014, will be Rare Disease Day in Minnesota.  On that day, millions of people across the U.S. will join the National Organization for Rare Disorders (NORD) in observing this special awareness day.  

As a resident of Minnesota, I believe this is important because national statistics would indicate that nearly 1 in 10 of those living in our state have rare diseases.  According to the National Institutes of Health (NIH), nearly 30 million Americans have rare diseases.

A disease is considered rare if it affects fewer than 200,000 Americans.  There are nearly 7,000 such diseases according to NIH.  They tend to be serious and/or lifelong, and approximately two-thirds of those affected are children. 

Special events and activities are planned in schools, hospitals, universities and medical schools for February 28^th.  Individuals and families affected by rare diseases will be sharing their stories on social media; in radio, TV, and newspaper interviews; and at community events throughout Minnesota and across the U.S.

On the official national website for Rare Disease Day in the U.S. (www.rarediseaseday.us) hosted by NORD, residents of our state will be posting photos and messages, information about special events they are planning, and tributes to caregivers who have made a difference in their lives.  Our state’s support for Rare Disease Day also will be noted for all to see.

Minnesota has a strong history of support for its citizens’ causes. I hope that, as a state, we will step forward to show our concern for those who might otherwise feel isolated and let our neighbors living with rare diseases know that, while their diseases are rare, they are not alone.

With best regards,

Kari Ulrich

Rare Disease Advocate
Albert Lea, MN 56007