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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 >


  • Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

    “Any proposal that stands in patients' way to finally obtaining a safe and effective therapy is unacceptable.”

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  • Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit

    “Our organizations, which collectively represent millions of individuals with rare diseases, stand united in opposition to the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC).”

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  • NORD Issues Statement on Nomination of Alex Azar for Secretary of the Department of Health and Human Services

    “We look forward to the opportunity to work with him if he is confirmed by the Senate.”

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  • NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit

    “We implore Congress to stand with over 200 patient organizations, stand up for the 30 million Americans with rare diseases, and preserve the Orphan Drug Tax Credit.”

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