SOURCE National Organization for Rare Disorders (NORD®)

Annual state report card highlights progress and persistent gaps in access to care for 30 million Americans

WASHINGTON, Feb. 9, 2026 /PRNewswire/ -- Access to care for Americans living with rare diseases still depends heavily on where they live, according to the National Organization for Rare Disorders (NORD®), which today released its 2025 State Report Card grading all 50 states and Washington, D.C. on policies affecting more than 30 million Americans, half of whom are children.

The report finds that while states have made progress in areas such as telehealth and prescription affordability, major gaps remain in protections that determine whether people living with rare diseases can access timely, life-sustaining care.

Overall, the nation earned a "B", reflecting incremental improvement. But that national average masks wide disparities among states and leaves many families vulnerable when they need care most.

Key findings from the 2025 report include:

  • Medical nutrition coverage remains one of the weakest policy areas nationwide. Thirteen states received failing grades, and no state earned an A, leaving many patients without access to specialized nutrition required to manage or survive their disease.
  • Telehealth access continues to expand, with 43 states earning passing grades, improving access to rare-disease specialists who are often located far from patients' homes.
  • Twenty-two states failed to protect patients from short-term "junk" insurance plans, which can exclude essential benefits and treatments: a risk heightened after federal agencies deprioritized enforcement of these plans in August 2025, leaving state laws as the primary safeguard for patients.

Only four states, Colorado, Delaware, Maine, and New Jersey, earned overall A grades, while most states clustered in the middle, with 25 earning Bs and 22 earning Cs, underscoring how widely protections still vary by geography.

"We applaud the progress over the past year," said Pamela K. Gavin, Chief Executive Officer of NORD. "But it remains unacceptable that access to life-saving care still depends on where a family lives. No one is immune to acquiring a rare disease. It affects millions of families in every state. Policymakers must strengthen protections so patients can access treatment without facing devastating financial hardship."

Now in its 11th year, NORD's State Report Card evaluates state performance across nine key policy areas, including Medicaid eligibility, prescription affordability protections, telehealth, insurance safeguards, and medical nutrition coverage. Improvements in prescription affordability and telehealth helped lift overall performance in 2025, but rollbacks and policy gaps in several states continue to put patients at risk.

One area of growing concern is the absence of Rare Disease Advisory Councils (RDACs) in many states. These councils provide patients and caregivers with a formal voice in shaping healthcare policy and funding priorities. Nineteen states still lack an RDAC, limiting direct patient input as states take on more responsibility amid federal pullbacks.

Since launching Project RDAC in 2020, NORD has helped establish 25 of the 33 councils nationwide. In 2025, four states, Vermont, Oklahoma, Hawaii, and Pennsylvania, introduced legislation to establish new councils.

"Every Vermonter deserves to be seen, heard, and supported, especially those living with rare diseases who too often fall through the cracks of our healthcare system," said Rep. Mary-Katherine Stone (D-VT). "The Rare Disease Advisory Council is how we start making that commitment real."

Additional states, including Michigan, New York, Utah, and Washington, introduced legislation to extend or strengthen existing councils. Four of the five most populous states, California, Florida, New York, and Pennsylvania, currently have RDACs, while Texas does not.

About the Report
NORD has issued its State Report Card annually since 2015, evaluating policy data available through December 2025. The report examines nine policy areas affecting access to care for people living with rare diseases.
View the full report and individual state grades at:
https://rarediseases.org/driving-policy/nord-state-report-card/

About the National Organization for Rare Disorders
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of more than 30 million Americans living with rare diseases. In partnership with over 350 disease-specific patient organizations, NORD advances rare disease research, care, and policy. Learn more at rarediseases.org.

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