Policy Statements
Ready NORD's policy statements on the issue that matter most to you.
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Since its establishment in 1983, the National Organization for Rare Disorders has advocated for policy changes to improve the lives of Americans impacted by rare diseases at the federal and state levels. NORD continues this critical work to this day. Read more about our policy positions on this page.
For the first time, due to the Inflation Reduction Act, the Centers for Medicare & Medicaid Services (CMS) will be able to negotiate the prices of certain prescription drugs. This will have significant impacts for some rare disease patients on their ability to afford needed treatments but could also impact broader rare disease drug development.
NORD is taking a leading role to ensure this law ultimately benefits the more than 25 million patients and families living with rare disease, and you can help us!
The government wants to hear from you as it finalizes the program’s requirements and parameters. Click here to learn more and submit your feedback before April 14, 2023.
More than 90% of rare diseases lack an FDA approved treatment. NORD was founded by advocates who helped to pass the Orphan Drug Act, which provides key incentives to spur the development of treatments for rare diseases. It is critical that the research and regulatory environment helps to address continued barriers for rare disease drug development and foster a successful bench to bedside pathway for rare disease treatments.
NORD advocates on polices such as:
Patients with rare disorders often find their financial lives upended by the debilitating nature of their diseases, and on their behalf, NORD is committed to ensuring access to affordable, comprehensive health care coverage.
NORD advocates on policies such as:
Learn more about our work on access to diagnostics by visiting our policy statements here
Many rare disease patients face years of a difficult “diagnostic odyssey” before receiving their correct diagnosis. Obtaining an early and accurate diagnosis is critical for allowing patients to seek effective treatment sooner. For instance, newborn screening programs have been improving and saving the lives of children across the United States through the early identification of diseases that cause permanent disability or death if not treated early. For other patients with rare disorders, genetic testing holds the hope of a timely diagnosis and effective, targeted treatment, but access and affordability is currently a limiting factor.
NORD advocates on policies such as:
Learn more about our work on access to diagnostics by visiting our policy statements here
A Rare Disease Advisory Council (RDAC) is an advisory body providing a platform for the rare community to have a stronger voice in state government. RDACs address the needs of rare patients and families by giving stakeholders an opportunity to make recommendations to state leaders on critical issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures.
NORD’s Project RDAC is designed to optimize the existing RDACs and to increase the number of RDACs across the country. Under this initiative, NORD provides opportunities for the RDACs to collaborate with each other on a regular basis, creates educational resources to guide RDACs at every step of their journey, and helps states pass legislation to create high functioning RDACs.
Learn more about Project RDAC and learn how to get involved here
People with rare diseases face many challenges, including traveling significant distances, often across state lines to find a health care provider knowledgeable about their specific rare disease and the need to take time off to attend numerous medical appointments or care for a loved one with a rare disease. Additionally, the COVID-19 pandemic has had significant impacts on our community.
NORD advocates on policies such as: