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Tools and Resources

Search NORD’s Database for reports on more than 1,200 diseases. Search database >

Find free webinars, fact sheets, infographics and other helpful materials. View resources >

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 >

The international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >


  • Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia

    “Research study is open to participants worldwide to advance understanding and treatments for the rare disease Fanconi anemia, diagnosed and confirmed through a combination of clinical findings and genetic analysis.”

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  • Neurology Reviews and NORD Publish Annual Rare Neurological Disease Special Report

    “The 6th edition of the annual report highlights the significant role of the rare community in compiling critical information, sharing connections, and the resulting benefits.”

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  • NORD Releases 2019 Annual Report, “At the Heart of Progress in Rare Disease”

    “During times of crisis we are once again reminded of how honored we are to fight for and alongside the rare disease community.”

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  • NORD and EURORDIS-Rare Diseases Europe Issue Joint Statement on COVID-19 and Orphan Drug Legislation

    “US and European rare disease patient alliances the National Organization for Rare Disorders (NORD®) and EURORDIS-Rare Diseases Europe are calling for the expeditious development of COVID-19 treatments without the use of orphan drug incentives.”

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