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RIA 2020 Virtual

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Summit Virtual

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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 >


  • Nebraska Medicaid Expansion Is Progress for Rare Disease Patients, Highlights Critical Need to Support Medicaid During COVID-19

    “NORD advocates for Medicaid expansion to ensure that all rare disease patients can access quality, affordable health care coverage regardless of their income. ”

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  • NORD Launches Innovative Natural History Study on Metachromatic Leukodystrophy (MLD)

    “NORD’s Natural History Of MEtachromatic Leukodystrophy (HOME) Study expands the use of natural history data to support novel clinical trial designs, patient participation in clinical studies and virtual research opportunities. ”

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  • Voices of Rare Cancer: Courtney’s Story

    “Her story is an example of the difficulties in establishing treatment protocols for rare cancers, especially for this aggressive adolescent/young adult (AYA) liver cancer which primarily strikes 12-34-year olds who have so much life to look forward to.”

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  • TODAY IS RARE CANCER DAY! Voices of Rare Cancer: Lisa’s Story

    “Throughout the day, NORD will be sharing facts, information and patient stories. Here is Lisa's story where she shares her experience with cholangiocarcinoma. ”

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