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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 >


  • Hear user voices on NORD registries

    “NORD IAMRARE Registry users share their thoughts on how their patient registries are benefiting their communities and how they are using the data.”

    Read more >

  • NORD announces expansion of three Patient Assistance Programs

    “Chronic Granulomatous (CGD), Cystinosis and Urea Cycle Disorders (UCD) programs expanded”

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  • Orphan Drug Act Resolution Introduced in the House of Representatives

    “Representatives Butterfield and Bilirakis introduced a resolution in support of the Orphan Drug Act (ODA).”

    Read more >

  • NORD Announces Honorees for 2019 Rare Impact Awards

    “It is our privilege to honor these individuals and organizations for their stellar contributions to the community, and our pleasure to do so in a truly out-of-this-world setting.”

    Read more >