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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 >


  • Head of the Herd: Emile Najm, KAT6A Foundation

    “Emile Najm’s son was diagnosed with KAT6A in 2017. Since then, he established the KAT6A Foundation and has led the work of initiating the KAT6A patient registry with NORD.”

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  • NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

    “Drawing on NORD’s expertise in capacity-building and nonprofit management during crises, the new program will support rare disease patient organizations through education, training and resources.”

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  • NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research

    “Since the program’s launch in 1989, NORD grants have led to the development of two FDA-approved treatments and numerous peer-reviewed publications. ”

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  • NORD to Host an Externally-led Patient-Focused Drug Development Virtual Meeting on Krabbe Disease, Thursday, October 29

    “If you are a patient, family member or caregiver affected by Krabbe disease, this is an important opportunity to have your voice heard by the US Food and Drug Administration (FDA). ”

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