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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 >


  • Protecting Your Healthcare Coverage

    “Update (March 24) Thank you to everyone who called their members of Congress today! As the health care system continues to evolves, NORD will be there to continue our work with legislators and patient advocates to stand up for the health care coverage of our patients. ”

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  • NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees

    “The user fee acts are far too important to jeopardize with controversial partisan policy topics, said the two leading organizations that collectively represent millions of Americans with cancer and rare diseases”

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  • NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

    “We implore Congress to take urgent action to protect constituents and communities across the nation”

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  • NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)

    “The privacy of millions of individuals with rare diseases could be violated and NORD will do everything in our power to prevent this bill from moving forward in its current form”

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