The United States’ National Organization for Rare Disorders (NORD) has released its annual State Report Card, assessing all 50 US states on critical issues impacting access to care for people living with a rare disease. It evaluates elements such as newborn screening, Medicaid coverage, step therapy policies, telehealth, and financial accessibility of medications.
While the Report Card uncovered some negative trends, positive findings were also made such as:
- Step therapy protocol reforms in favour of patients in Alaska and New Jersey
- The establishment of Rare Disease Advisory Councils in Arizona, Montana and Rhode Island
- Protections against financial burdens in Illinois, Indiana, Iowa, Maryland, and Nevada
The State Report Card provides patients, advocates and policy-makers with a resource to better understand the progress made and ongoing challenges facing their state’s rare disease community. For more detailed information on specific states or topics, consult the full resource.
(source: OrphaNews 27 February 2026)