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EOY Campaign 2020

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RIA 2020 Watch On-Demand

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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 >


  • Head of the Herd: Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

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  • RDCA-DAP First Year Milestones Highlighted at Virtual Workshop

    “NORD, C-Path, FDA and more come together to showcase the importance of data sharing in rare disease drug development ”

    Read more >

  • NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

    “88% of rare patients offered a telehealth appointment during COVID-19 accepted it, 92% of whom said it was a positive experience”

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  • NORD mentioned, RareInsights fact sheet featured in Psychology Today article

    “A new article on, “People with Rare Diseases Need Better Social Support,” examines a new study that shows which types of support most benefit those with rare diseases.”

    Read more >