Since its inception in 1983, NORD has worked to ensure that the voice of the rare disease patient has been front and center when important policy and regulatory decisions have been made at both the federal and state levels.
In 2015, NORD launched its State Report Card project with a goal of evaluating how effectively states are serving people with rare diseases. It is important to note, however, that these issues are not exhaustive. The issues contained herein touch on several critical and relevant policy areas at the state level, but with each issue included, there are still many others that are capable of impacting the lives of rare disease patients.
The latest edition of the State Report Card was compiled using data current as of November 2022. 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.