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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 IAMRARE KAT6A Patient Registry Launched

    “ Research study is open to participants worldwide to advance understanding and treatments for rare disease causing KAT6A Syndrome”

    Read more >

  • Rare Disease Advocates Share Ideas for How to Mark Rare Disease Day 2019

    “See some of their responses in this blog post for Rare Disease Day inspiration!”

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  • NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

    ““We are excited to be providing information that covers all rare diseases currently recognized by NIH. It’s important to us that we represent and support the entire rare disease community and its needs,” said Sika Dunyoh, Director of Education Programs for NORD.”

    Read more >

  • NORD Issues Statement on FDA’s Impending Expanded Access Call Center

    “NORD strongly believes that rare disease patients should be given every opportunity to access promising investigational therapies through expanded access, and this new project will go a long way toward facilitating that goal.”

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