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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 >


  • FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker

    “Don't miss this opportunity to hear from experts and join the conversation about the new era of patient-focused innovation.”

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  • Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy

    “The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet challenging vision: to find a cure for Myotubular Myopathy (MTM)”

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  • Get to know Jill Pollander, NORD’s new Director of Patient Services

    “I am delighted to have joined the NORD team and am inspired by the efforts and successes NORD has had in the rare disease community.”

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  • NORD Issues Statement on Recent CMS Actions Pertaining to Patient Access Within Medicaid Formularies

    “NORD released the following statement regarding this week's actions by CMS to protect patient access to medication within Medicaid formularies.”

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