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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 >


  • One-pager from NORD on Opposition to Right to Try Act

    “We once again urge you to oppose this legislation and join the patient community in requesting legislation that will actually help our community, not harm it. ”

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  • NORD Statement Regarding State Proposals to Alter Their Medicaid Program

    “"If enacted, NORD believes that several of the current proposals would restructure Medicaid benefits and eligibility in a way that undermines the purpose of the program and disproportionately affects people with rare diseases."”

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  • Current Funding Opportunity: NORD Research Grants for Rare Diseases

    “NORD’s Rare Disease Research Grant Program is still accepting proposals for the study of three rare diseases.”

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  • NORD Sends Letter to House of Representatives on Right to Try Act

    “NORD Joins Patient and Provider Community In Opposition to Right to Try”

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