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Rare Cancer Day 2021

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Summit 2021 Virtual

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Newborn Screening

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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 Welcomes Aliza Fink, D.Sc. as Director of Research Programs

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  • Tatton Brown Rahman Syndrome Community and NORD® Launch Natural History Study of Tatton Brown Rahman Syndrome (TBRS)

    “Research study is open to participants worldwide to advance understanding and treatments for TBRS”

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  • A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

    “Shayna's story is meant to give some direction to patients and families who have been newly diagnosed and the importance of advocating and casting a wide net for options”

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  • Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program

    “C-Path, NORD and FDA host annual meeting, demonstration and launch of new rare disease data and analytics platform. ”

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