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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 >


  • 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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  • Pharmaceutical Medicine Publishes Paper by NORD Research Team as a Leading Article

    “Throughout the paper, the NORD research team describes the value of and rationale for establishing rare disease patient registries while explaining the considerations and challenges that researchers, industry, health care providers and patient community organizations, may encounter.”

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  • NORD Welcomes Prashant Goel as Vice President of Information Technology

    “Prashant, who joined NORD in February, leads a team of professionals with extensive knowledge of developing scalable enterprise-level systems, portals, and services that process millions of transactions daily across a variety of industries.”

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