Understanding the Impact of State Policies on Rare Diseases
Annual state report card highlights progress and persistent gaps in access to care for over 30 million Americans
Access to healthcare for those living with rare diseases heavily depends on geographical location, according to recently published findings from the National Organization for Rare Disorders (NORD). Their latest report has graded all 50 states, along with Washington, D.C., on policies impacting millions of individuals, including many children.
Key Insights from the 2025 Report Card
The report reveals that while certain progress has been made in areas like telehealth and medication affordability, significant gaps still exist. These gaps can directly affect whether individuals with rare diseases can access timely and life-critical treatments.
Overall, the nation received a grade of "B" on the report card. However, this average masks some stark differences in healthcare access and quality between various states, putting families in precarious situations when they face health challenges.
Critical Findings
Among the key takeaways from the 2025 report are:
- Medical nutrition coverage remains critically lacking, with thirteen states falling short of expectations and none achieving an "A" grade. This leaves numerous patients without vital nutritional support necessary to combat their diseases.
- Expansions in telehealth services are promising, as 43 states received passing grades, greatly increasing access to specialized care that many patients would otherwise struggle to obtain due to distance.
- An alarming twenty-two states failed to safeguard patients from inadequate short-term insurance plans, which often lack essential benefits. This is particularly concerning given recent federal policy changes that have made state-level regulations more crucial.
Diverse State Performance
Only four states – Colorado, Delaware, Maine, and New Jersey – managed to earn an "A" grade. In contrast, a considerable number of states showed moderate improvement, with 25 earning "B" grades and 22 receiving "C" grades. These outcomes underscore the variability of healthcare protections across the country.
“We applaud the progress over the past year,” said Pamela K. Gavin, the Chief Executive Officer of NORD. “However, the reality that access to life-saving treatments is still dependent on one’s state is disheartening. Rare diseases impact millions of families, and policymakers must reinforce patient protections to secure treatment access without financial distress.”
The Role of Rare Disease Advisory Councils
One significant concern highlighted in the report is the absence of Rare Disease Advisory Councils (RDACs) in numerous states. These councils offer patients and caregivers a platform to voice their needs and influence healthcare policy. Currently, nineteen states do not have an RDAC, which limits essential patient input during a time when states are increasingly managing their healthcare systems.
Since the inception of Project RDAC in 2020, NORD has successfully facilitated the establishment of 25 out of 33 planned councils nationwide. In 2025, several states, including Vermont, Oklahoma, Hawaii, and Pennsylvania, took steps to create councils that can empower local communities.
“Every individual in Vermont deserves access to essential support, particularly those grappling with rare diseases whose needs often go unnoticed,” noted Rep. Mary-Katherine Stone (D-VT). “The Rare Disease Advisory Council is integral to making this commitment tangible.”
Other states, such as Michigan, New York, Utah, and Washington, are moving forward with legislation to enhance or expand their existing councils, which is a positive trend for patient advocacy.
Continued Efforts and Commitment
NORD has been publishing its State Report Card since 2015, assessing data related to healthcare policies as of December 2025. The report thoroughly examines critical areas influencing care access for rare disease patients.
A full report, along with individual state evaluations, is available for those interested in understanding the status of rare disease care nationwide.
Frequently Asked Questions
What is the purpose of NORD's State Report Card?
NORD’s State Report Card evaluates state policies impacting individuals with rare diseases and provides a grading system to highlight areas of progress and concern.
How many states received an 'A' grade in the latest report?
Only four states—Colorado, Delaware, Maine, and New Jersey—received an 'A' grade in the 2025 State Report Card.
What major areas were examined in the report?
The report looked into nine key policy areas including Medicaid eligibility, prescription affordability, telehealth access, and medical nutrition coverage.
What challenges do patients face according to the report?
Many patients face challenges due to inadequate medical nutrition coverage, limited access to telehealth services, and weak protections against short-term insurance plans.
What role do RDACs play in healthcare for rare diseases?
Rare Disease Advisory Councils provide a platform for patients and caregivers to voice their experiences and help shape healthcare policies affecting their conditions.
