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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: 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.”

    Read more >

  • 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

    Read more >

  • CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns

    “This funding will help NORD to directly support patient advocacy organizations in developing their capacity to engage in research and building communities of rare disease patients, researchers, and clinicians working together to advance progress against their diseases. ”

    Read more >