A majority of states are not effectively addressing the challenges of living with rare diseases through state legislation and public health policies, a new NORD report shows. NORD’s State Report Card: A Roadmap to Improve the Lives of People with Rare Diseases measures states’ effectiveness in specific policy areas such as newborn screening, coverage for medical foods, biosimilar prescriber communications, protection against step therapy protocols, and establishment of rare disease advisory councils.
At the time the report was released, NORD also launched a new Rare Action Network website to help advocates address specific rare disease issues within their states.