Since its inception in 1983, the National Organization for Rare Disorders (NORD) has worked to ensure that the voice of the rare disease patient is front and center when important policy and regulatory decisions are made by federal and state governments.
In 2015, NORD launched its State Report Card, with the goal of evaluating how effectively states are serving people with rare diseases and giving our rare disease community a useful tool to help advocate for necessary changes. It is important to note the issues contained herein touch on several critical and relevant policy areas at the state level, but the nine issues evaluated within this report card are not exhaustive and there are many others that impact the lives of rare disease patients.
The latest edition of the State Report Card was compiled using data current as of November 2023. NORD hopes the State Report Card can serve as a tool for patients, advocates, and policymakers as they strive to advocate for state policies to best serve the needs of the rare disease community.