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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 >


  • NORD Launches New Patient Assistance Program Providing Support to Eligible NMOSD Patients

    “Neuromyelitis Optica Spectrum Disorder (NMOSD) Program provides financial assistance to eligible individuals diagnosed with this rare, chronic disorder.”

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  • NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

    “Resulting from a ground-breaking externally-led Patient-Focused Drug Development meeting, the newly published report gives voice to patients and families affected by pyruvate kinase deficiency, a devastating rare genetic disorder characterized by hemolytic anemia.”

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  • NORD Reaches 300 Members!

    “We encourage all patient advocacy organizations to consider joining NORD!”

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  • Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

    “Introducing a new monthly feature highlighting leaders of NORD Member Organizations”

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