In the United States patient access to health care is increasingly dependent upon state policies. To understand the similarities and differences among the states on rare disease policies, the National Organization for Rare Disorders (NORD) has developed and released the first ever State Progress Report which evaluates how states are serving the 30 million Americans with rare diseases. In its initial release, the State Progress Report focuses on four key policy areas: medical foods coverage, prescription cost sharing requirements, newborn screening, and Medicaid eligibility levels.
The 65 page document contains an executive and national summary, key policy sections, and detailed appendices with state by state breakdowns, maps, contacts and resources. The report is also a toolkit that provides resources for stakeholders to advocate on these issues. This includes NORD’s Rare Action™ Network, its grass roots advocacy community that connects advocates and gives them the tools to support the rare disease community in their state. The progress report offers information on how to sign up for Rare Action and a list of local contacts. The report will launch with a dedicated page on the NORD website with patient stories, downloadable toolkit with action alerts, and maps.