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LRLS 2020 Virtual

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Summit 2021 Virtual

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Barriers to Rare Disease

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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 Expands Gene Therapy Offerings Through New Online Resources

    “NORD prioritizes gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions”

    Read more >

  • Ray Stevens is Taking Rare Disease Awareness to New Heights

    “Ten years after running across the Sahara Desert for PKU awareness, one researcher is climbing the Himalayas and Mount Everest to raise awareness for all rare diseases”

    Read more >

  • New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars

    “NORD commissioned Avalere to conduct the analysis to examine if laws and regulations are helping to bring new treatments to market for rare disease patients”

    Read more >

  • Save On Quality, Vetted PPE with NORD and Project N95

    “NORD’s collaboration with our nonprofit partner Project N95 gives the rare community access to special pricing for small quantities of verified, vetted PPE.”

    Read more >