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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 >


  • Honoring the Rock Stars of the Rare Disease Community: NORD Announces the 2022 Rare Impact Award Honorees

    “NORD’s Rare Impact Award ceremony on June 26 will honor all those making strides to improve the lives of patients and families in the rare disease community ”

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  • FDA’s Accelerated Approval Pathway: A Rare Disease Perspective

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  • Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

    “NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community ”

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  • Scleroderma and Horses: Whitney’s Rare Disease Day Story

    “Read Whitney's story in honor of Rare Disease Day.”

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