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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 >


  • The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience

    “Telehealth is generally described as a virtual communication used to deliver care outside of a typical or traditional health care facility.”

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  • NORD Issues Statement on Recently Introduced “Promising Pathway Act”

    “Contrary to the stated goal of giving patients with serious and life-threatening diseases a “chance at receiving meaningful treatments,” this legislation, by its own terms, would lower FDA’s approval standards, exposing patients to unsafe and ineffective medicines.”

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  • FDA Oncology Center of Excellence Listening Session with NORD: A Patient Perspective

    “NORD's Rare Cancer Coalition identified rare cancer patients and caregivers to share their experiences with the FDA around participating in clinical trials during the pandemic.”

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  • The Motley Fool Chooses NORD as One of Three Nonprofits Worthy of Donations

    “If you're interested in making a high-impact donation but you don't want to waste your capital on a potentially ineffective organization, look no further than these three nonprofits.”

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