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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 >


  • NORD Rare Action Network℠ Releases Summer 2017 State Policy Legislative Tracker

    “See what legislation we are tracking this summer (and join us!) to help improve the lives of people with rare diseases.”

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  • Rare Disease Advisory Council Bill Moves through Pennsylvania House

    “June 29: UPDATE-H 239 Passes Senate ”

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  • NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan

    “The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders, following the FDA’s announcement of its Orphan Drug Modernization Plan.”

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  • NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

    “The patient voice was loud and clear, and Senators listened.”

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