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Tools and Resources

Search NORD’s Database for reports on more than 1,300 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 >


  • Advocacy Alert: Tell Congress to Act Now and Pass FDA User Fee Agreements

    “Patient advocacy groups: Add your organization's name to our sign-on letter”

    Read more >

  • NORD Rare Action Network℠ Releases Spring 2017 State Policy Legislative Tracker

    “See what legislation we are tracking (and join us!) to help improve the lives of people and families with rare diseases”

    Read more >

  • NORD Names New Director of Membership

    “Debbie Drell joins NORD with more than 18 years of nonprofit experience in public health education, awareness and advocacy”

    Read more >

  • International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid

    “Sponsored by NORD and the FDA, this new study will advance P/P research with help from YOU, the patient”

    Read more >