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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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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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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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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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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.
The network drives awareness and change for those livingwith a rare disease through comprehensive tools, training, and resources.
Learn MoreOur National and Regional Policy and Advocacy Taskforces provide forums for volunteers to be more deeply involved in grassroots advocacy efforts and to fight for legislative solutions.
Learn MoreOne in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.