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LRLS 2020 Virtual

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Summit 2021 Virtual

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Barriers to Rare Disease

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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 >


  • Continuing the Conversation: FDA and CDC Leaders Discuss Vaccines and the Pandemic

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  • NORD Issues Statement on California v. Texas Ruling

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  • Ray Stevens’ Rare Disease Reflections from 22,000 Feet

    “Ray Stevens, rare disease researcher and advocate, has concluded his Himalayas and Mt. Everest trek to rare awareness for the rare community.”

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  • NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

    “New position reflects NORD’s commitment to advancing research and improving medical outcomes for the millions of Americans living with rare diseases”

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