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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 >


  • Over 160 Patient Organizations Reemphasize Support for the Orphan Drug Tax Credit

    “We must continue to make our voices heard as the debate on tax reform proceeds in order to ensure that the Orphan Drug Tax Credit remains in place.”

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  • NORD Issues Statement in Response to Senate Vote on the Orphan Drug Tax Credit

    “It is difficult to put into words how gravely disappointed we are that the Senate has chosen to cut, nearly in half, a crucial incentive for rare disease drug development when 95 percent of rare diseases remain without one single treatment. ”

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  • NORD Publishes Information for Physicians and Patients on Three Rare Diseases

    “ The physician guides and patient reports are part of NORD’s ongoing educational programs to promote awareness among medical professionals and to support the need of patients and their families for non-technical information.”

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  • Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

    “Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases”

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