Since 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. NORD began when a group of parents of children with rare diseases came together to advocate for the passage of the Orphan Drug Act of 1983 (ODA).
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, which was compiled using data current as of November 2021. The State Report Card is presented in a new format this year. In an effort to make the data in the report more accessible during a time when so many individuals are operating remotely as a result of the pandemic, we have converted the State Report Card to a largely digital format to not only house all the information contained in the previous editions of the Report but also additional resources on these important policy topics. NORD hopes this website 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.