NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

February 4, 2021
Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million Americans living with rare diseases. Despite a year marked by devastating impacts from the COVID-19 pandemic, the State Report Card demonstrates that progress was made in many states on newborn screening, step therapy, Rare Disease Advisory Councils and other key policies. The report also notes the need for states to take additional steps to address out-of-pocket prescription drug costs for rare disease patients and to protect patient access to affordable, comprehensive health care services.

“The State Report Card provides insight into the advances being made at the state level in supporting Americans living with rare diseases, and identifies where we still need to focus attention,” said NORD President and CEO, Peter L. Saltonstall. “For almost 40 years, NORD has served as the voice of the rare disease community, and we are committed to fighting for rare disease patients and policy changes that will make a difference in their lives. Our hope is that patients, advocates and policymakers find the new State Report Card site a useful tool in their work on policies to best meet the needs of rare patients and families.”


The 6th Edition of the State Report Card, compiled using data current as of November 2020, is presented in a new digital format, giving improved accessibility to the information contained in previous editions, as well as ad