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Tools and Resources

Search NORD’s Database for reports on more than 1,200 diseases. Search database >

Find free webinars, fact sheets, infographics and other helpful materials. View resources >

Resources to help you start or grow your patient organization. View resources >

Visit our new platform where rare disease patients can fundraise, communicate and advocate.  Start now >

NORD Patient Assistance Programs help patients obtain life-saving or life-sustaining medication. View programs >

The international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >


  • NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

    “As all levels of government and a variety of stakeholders look for legislative and regulatory tools to find ways to ensure that medicines are affordable, NORD has compiled the following principles to help guide NORD’s engagement with these issues in a deliberate and transparent manner”

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  • NORD Research Grant Program Celebrates 30th Anniversary, Funding Opportunities Announced

    “All U.S. and international researchers are encouraged to apply by the initial application deadline of June 18, 2019”

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  • NORD IAMRARE DHPS Patient Registry Launched

    “Patient-Powered Research for a Brighter Future”

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  • Become a rare disease mythbuster during NORD’s Living Rare, Living Stronger Patient & Family Forum

    “Join us for a special weekend of busting rare disease myths! ”

    Read more >