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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 Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

    “We urge both Republic and Democratic Senators to stand up for the rare disease community and reject the "Graham-Cassidy" proposal as written.”

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  • Protecting Your Healthcare Coverage

    “Update (September 18) NORD joins coalition in opposition of the Graham/Cassidy bill, the latest proposal to repeal the Affordable Care Act (ACA).”

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  • Nearly 140 Patient Organizations Support the Orphan Drug Tax Credit

    “We will continue to make our voices heard as Congress considers tax reform proposals.”

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  • NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

    “New Resource Aims to Provide Information for Patients, Families and the Public”

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