National Report Highlights Variability in Rare Disease Access Across States

The National Organization for Rare Disorders (NORD) has unveiled its 2025 State Report Card, delivering a sobering analysis of healthcare policies affecting Americans with rare diseases. This annual report, now in its 11th year, evaluates the performance of all 50 states and Washington, D.C., highlighting significant disparities in access to care for more than 30 million individuals living with these conditions.

Overview of Findings

The report assigns an overall grade of 'B' to the nation, suggesting incremental improvement in certain areas, particularly in telehealth and prescription drug affordability. However, the average has masked stark contrasts among states, leaving numerous families without necessary access to life-saving services.

Among the 50 states, only four—Colorado, Delaware, Maine, and New Jersey—achieved an overall grade of 'A,' indicating strong policies in favor of rare disease patients. The data underscores that access to essential care often hinges on geographical location, with significant gaps persisting across various key policy areas.

Key Issues Identified

1. Medical Nutrition Coverage: This policy area performed poorly nationwide, with 13 states failing to provide adequate provisions, and no state achieved an 'A'. As a result, many patients are deprived of specialized nutritional needs essential for managing or surviving their conditions.

2. Telehealth Accessibility: On a more positive note, 43 states earned passing grades in telehealth, signifying an increased capacity for patients to connect with rare disease specialists—critical for those living in remote areas.

3. Insurance Protections: Alarmingly, 22 states did not provide sufficient safeguards against short-term