National Organization for Rare Disorders Evaluates State Policies on Rare Diseases, Highlights Disparities
The National Organization for Rare Disorders (NORD) has released its 2025 State Report Card, assessing the policies of all 50 states and Washington, D.C. regarding rare diseases. The report evaluates state performance across nine key policy areas, including Medicaid eligibility, prescription affordability, telehealth, insurance safeguards, and medical nutrition coverage. While there have been improvements in telehealth and prescription affordability, significant gaps remain, particularly in medical nutrition coverage, where no state received an A grade. The report also highlights the absence of Rare Disease Advisory Councils (RDACs) in 19 states, which limits patient input in healthcare policy. Only four states—Colorado, Delaware, Maine, and New Jersey—earned overall A grades, while most states received Bs and Cs, indicating a wide disparity in protections based on geography. 
