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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 >


  • AAMDSIF and NORD Launch New Natural History Study of Paroxysmal Nocturnal Hemoglobinuria (PNH)

    “ The worldwide registry will advance understanding of and spur innovation in treating PNH”

    Read more >

  • New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey

    “About 1 in 13 people are currently living with an undiagnosed condition.”

    Read more >

  • CDISC and NORD Partner to Develop Data Standards for Rare Diseases

    “Therapeutic Area User Guides provide examples and guidance on implementing CDISC standards so that data can be structured effectively and easily analyzed.”

    Read more >

  • 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 >