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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 >

News

  • Head of the Herd: Bonnie Royster, CdLS Foundation

    “I love using my skill and expertise in a way that is meaningful to our families – raising awareness and being the chief executive advocate for them.”

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  • NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

    “At NORD, we are proud to honor these special people, groups and companies with Rare Impact Awards for their achievements, and this year are thrilled to do so in a setting truly befitting their superstar status.”

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  • Essay on protecting the Orphan Drug Act by NORD’s Peter L. Saltonstall published in CQ Researcher

    “Over 90 percent of the more than 7,000 known rare diseases still do not have a Food and Drug Administration approved therapy, often leaving rare disease patients with a choice of going without treatment or relying on off-label use of other medicines.”

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  • Head of the Herd: Mike Morris, TANGO2 Research Foundation

    “Don’t wait to get started on an initiative, a project or an idea until you think you “know everything.” Many of us are not experts in the rare disease space, but bring other experiences and skills to the table. It’s okay to learn as you do and the important thing is to keep pushing things forward. ”

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