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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 >

News

  • NORD Addressing the Affordable Care Act

    “NORD will provide updates on the advocacy work that is being done to protect the Affordable Care Act. ”

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  • Orphan Drugs Represent 41 Percent of All New Medications

    “Data released by the FDA show that 9 of the 22 new medications approved in 2016 are orphan drugs to treat rare diseases”

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  • First Natural History Registry for Necrotizing Enterocolitis

    “The Morgan Leary Vaughan Fund has launched the first natural history registry for Necrotizing Enterocolitis”

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  • Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched

    “Research study is open to participants worldwide to advance understanding and treatments for rare disease causing non-syndromic intellectual disability”

    Read more >