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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 on the Better Care Reconciliation Act of 2017

    “We find that the BCRA fails to meet several of the NORD Principles, and we are therefore compelled to oppose the legislation as written.”

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  • Protecting Your Healthcare Coverage

    “Update (June 20) NORD Launches Days of Action to Protect Your Healthcare Legislation as Senate Debates healthcare reform legislation”

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  • NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

    “This multi-channel campaign will rally advocacy organizations and patient communities to take action by telling their Senators and Governors why Medicaid and pre-existing condition protections are vitally important to their constituents. ”

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  • NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb

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