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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 >

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The international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >


  • All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome

    “All Things Kabuki and NORD have launched a study with global reach to research Kabuki syndrome”

    Read more >

  • NORD to Host Historic FDA Meeting on Galactosemia, in Partnership with the Galactosemia Foundation

    “A historic, virtual meeting of the galactosemia community, FDA, and drug development leaders will be hosted on Thursday, September 1st ”

    Read more >

  • Rebekah’s Rare Story: How Mrs. Massachusetts Petite Spreads Hope & Awareness

    “Read more about Rebekah's rare journey.”

    Read more >

  • Take Action on July 19: Help End Harmful Step Therapy Policies By Urging Congress to Support the Safe Step Act

    “Contact your legislators and join the social media day of action using #SSADayOfAction”

    Read more >