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Tools and Resources

Search NORD’s Database for reports on more than 1,200 diseases. Search database >

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 >

NORD raises awareness of rare diseases among physicians, clinicians and other medical professionals. View guides >

The international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >


  • NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

    “This year’s meeting will feature as keynote speakers parent advocate, award-winning journalist, and founder/CEO of The Mighty, Mike Porath; and newly-named Commissioner of the Food and Drug Administration, Dr. Scott Gottlieb.”

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  • NORD Issues Statement Regarding the Release of Revised Draft of the Better Care Reconciliation Act

    “ NORD will maintain its opposition to this legislation. ”

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  • Protecting Your Healthcare Coverage

    “Update (June 27) NORD Issues Statement in Response to Delay on Senate BCRA Vote”

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  • The National Health Council and NORD Commend House Passage of FDA User Fee Reauthorization; Urge Senate to Follow Suit

    “We commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) with overwhelming bipartisan approval.”

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