Rare Disease Policy

NORD’s Project RDAC (Rare Disease Advisory Council) resources and materials were critical in helping the Massachusetts RDAC bring our first meeting to order in September 2021. Since that first meeting, NORD has connected us with a network of leaders from other established RDACs, who have provided us with guidance and support as we have developed our council’s plan to make tangible improvements in the lives of people with rare diseases in Massachusetts.

—Dylan Tierney, MD, MPH, MA RDAC Chair

Policy in Action

Orphan Drug Act

NORD continues to advocate for this vital law. We were instrumental in the passage of the Orphan Drug Act of 1983, which spurs innovation by providing incentives for the development of treatments for rare diseases.
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Affordable Health Care

We fight for access to affordable, comprehensive health care, enabling rare disease patients to receive the services and treatments they need.
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Rare Disease Advisory Councils (RDACs)

RDACs provide a platform for the rare disease community to have a stronger voice in state government and make recommendations to state leaders on critical issues.
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Newborn Screening and Genetic Testing

To improve early detection and diagnosis of rare diseases, we advocate for policies to enable robust newborn screening programs and access to necessary genetic testing.
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How You Can Take Action

NORD's Public Policy Positions

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Policy Statements & Letters to Policymakers

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Giving a Voice in Government “Project RDAC”

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See How Your State Supports Rare Diseases

State Report Cards help evaluate if your government is doing its job serving people with rare diseases. These report cards provide data on key financial, insurance, inclusion, and treatment issues.

View NORD's State Report Card