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Tools and Resources

Search NORD’s Database for reports on more than 1,200 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 >


  • Rare Disease Advisory Council Bill Moves through Pennsylvania House

    “Pennsylvania HB 239 establishes a Rare Disease Advisory Council and ensures rare disease patients have a voice in government”

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  • NORD Statement on Confirmation of New FDA Commissioner

    ““We at the National Organization for Rare Disorders look forward to working with Dr. Scott Gottlieb."”

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  • NORD Launches Free CME Program to Educate Medical Professionals about Rare Diseases

    “NORD's first continuing medical education (CME) event will take place on June 17 in Washington, D.C.”

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  • NORD and National Health Council Submit Sign-On Letter to Congress Urging the Swift Reauthorization of FDA User Fees

    “The chronic and rare disease and disability patient communities rely on FDA to ensure that innovative, safe, and effective treatments reach those in need.”

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