NORD Advocates Push for Better Insurance and Rare Disease Care in DMV

Advocates from the National Organization for Rare Disorders (NORD) are seeking reforms to health insurance regulations and improved access to care within Washington D.C., Maryland, and Virginia.

The push for local insurance reform follows the release of NORD’s 2025 state report cards, which evaluate the progress of states and jurisdictions in policy areas that affect individuals and families living with rare diseases.

According to reporting from NBC4 Washington, Washington D.C., Maryland, and Virginia each received an overall grade of B. While these overall scores align with the broader United States average, NORD’s analysis indicates more significant fluctuation when grades are broken down by specific policy areas, particularly those involving insurance.

Insurance Barriers and Patient Impact

During a congressional briefing held on February 24, 2026, caregivers and patients identified health insurance as one of the most difficult aspects of managing rare diseases. Advocates argue that patients with rare conditions face significantly higher barriers to accessing treatment compared to patients with more common illnesses.

Dr. Ada Hamosh, a geneticist at Johns Hopkins Medicine and the chair of Maryland’s Rare Disease Advisory Council, noted the increased difficulty of securing necessary services for rare conditions. As reported by NBC4 Washington, Dr. Hamosh stated that while ordinary conditions are challenging, If you have a rare condition, you add orders of magnitude of more complexity and difficulty and frustration and trying to get the services that you need.

The scale of the affected population is significant. Data from the National Institutes of Health indicates that approximately 25 million to 30 million people in the United States are currently living with a rare disease, and about half of those individuals are children.

NORD Policy and Advocacy Efforts

NORD operates in partnership with more than 350 disease-specific patient organizations to advance care, research, and policy for the rare disease community. The organization pursues both federal and state policies to reduce barriers for impacted Americans.

To strengthen these advocacy efforts, NORD announced strategic leadership appointments on March 24, 2026. These appointments are intended to enhance the organization’s policy leadership and its ability to drive legislative changes.

The organization’s state report cards, which were publicized on February 9, 2026, serve as a primary tool for tracking how different jurisdictions manage the specific needs of rare disease patients and where insurance regulations require adjustment to improve patient outcomes.