New Law Helps Minnesotans with Rare Diseases Access More Specialists

January 11, 2024

As of January 1, Minnesota patients with rare diseases will have better access to appropriate specialists who may be out-of-network.  

Last session, the Legislature passed a "network access bill” that aims to reduce the diagnostic odyssey, address health equity and improve outcomes for Minnesotans with rare diseases.  

The policy is geared toward any Minnesota resident with a diagnosis of a rare disease as defined by the Genetic and Rare Disease Center list, created by the National Institutes of Health (NIH). It also applies to those who: 

• have received two or more clinical consultations from a primary care provider or specialty provider that are specific to the presenting complaint;  

• and have documentation in the enrollee’s medical record of a developmental delay through standardized assessment, developmental regression, failure to thrive, or progressive multisystemic involvement;  

• and have had laboratory or clinical testing that failed to provide a definitive diagnosis or resulted in conflicting diagnoses. 

For more information on access barriers, read the Minnesota Rare Disease Advisory Council's Healthcare Access Study here.