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Tools and Resources

Search NORD’s Database for reports on more than 1,300 diseases. Search database >

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 >

NORD raises awareness of rare diseases among physicians, clinicians and other medical professionals. View guides >

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


  • New Paper Addresses Health Care Costs and Patient Assistance Programs

    “NORD Issues Position Statement on Patient Assistance Programs”

    Read more >

  • NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

    “If an FDA-approved treatment exists, patients deserve to have access to it, said Peter L. Saltonstall, president and CEO of NORD”

    Read more >

  • RareAction Network℠ Releases April State Legislative Tracker

    “We are making progress throughout the country for the 1 in 10 Americans with rare diseases.”

    Read more >

  • NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement

    “Our goal is for the 1 in 10 Americans with rare diseases, most of whom are children, to have a treatment and cure, said Saltonstall”

    Read more >