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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 Regarding House Vote on Right to Try

    “As this legislation heads to the Senate, we will continue to voice our concerns with a pathway that will diminish the ability of the Food and Drug Administration's (FDA)”

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  • NORD Joins Over 100 Patient and Provider Organizations in Opposition to Right to Try

    “We will continue to make our voices heard as Congress considers the Right to Try Act. Please stay tuned for further updates.”

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  • NORD Rare Action Network™ 2018 State Report Card

    “States Falling Short on Policies to Help Reduce Burden of Rare Diseases”

    Read more >

  • NORD Issues Statement Regarding House Vote on Right to Try

    “We are relieved the bill will not be moving forward at this time and thankful for the many Representatives who voted against the creation of a less-safe, redundant pathway for accessing investigational therapies outside of clinical trials.”

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