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Barriers to Rare Disease

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RDACs

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EOY Campaign 2020

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RDD 2021

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RIA 2020 Watch On-Demand

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Telehealth

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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 >

News

  • New Video Series Featuring Patient Advocacy Group Leaders, “The Importance of Patient-Reported Data to Progress in Rare Disease,” Launched by NORD, C-Path

    “Patients and caregivers bring a human perspective to the drug development process and can guide researchers toward beneficial treatment outcomes.”

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  • NORD and Partners Publish Abstract Based on Web-Based Hemophilia A Educational Initiative for Patients, Caregivers and HCPs

    “To respond to the needs of health care providers, patients and caregivers, NORD partnered with the Hemophilia Federation of America, National Hemophilia Foundation, and PlatformQ Health to create web-based education modules on hemophilia A.”

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  • Connecticut Magazine Features NORD in Article on CT Nonprofits

    “NORD noted for championing the fight against rare diseases through education, advocacy, research, and service programs”

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  • NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades

    “As part of an ongoing mission to generate evidence and data to advance our collective understanding of the rare disease patient experience, NORD conducted two studies aimed at identifying trends in rare disease diagnosis, care and treatment in the United States.”

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