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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 Included in Article on Rare Autoimmune Diseases

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  • Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey

    “Meeting other young adults in the Huntington’s disease space was huge for me because I didn’t have to explain myself, they just got it. I wanted to bring that sense of belonging to other young adults living with rare or chronic conditions.”

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  • NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

    “The awards will assist patient advocacy groups to access capacity-building tools and training needed in the new virtual environment made necessary by COVID-19. ”

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  • Head of the Herd: Taylor Kane, Founder and President, Remember the Girls

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