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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 >


  • Summerly’s Rare Journey

    “Read about Summerly and her family's rare disease journey.”

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  • NORD Applauds Congressional Efforts to Restore Intent of the Orphan Drug Act

    “NORD Applauds Legislative Efforts to Restore Intent of the Orphan Drug Act within H.R. 7667, the Food and Drug Amendments of 2022, and with Introduction the Retaining Access and Restoring Exclusivity (RARE) Act ”

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  • NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History

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  • Maine Elevates Rare Disease Voices, Establishes State Advisory Council

    “Maine becomes the 23rd state to create a council that will help address the needs of rare disease patients and their families  ”

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