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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

  • 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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  • NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

    “Rare Disease Advisory Councils (RDACs) enable the rare community to have a say in how their state’s programs and policies can support patients and caregivers.”

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  • Telehealth Report from NORD Covered in Managed Healthcare Executive

    “NORD Report: COVID-19 Telehealth Surge Especially Important for People With Rare Diseases”

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