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Newborn Screening

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Rare Cancer Day

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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 >


  • US Senator Richard Blumenthal (D-CT) releases statement of support regarding Rare Cancer Day

    “On Rare Cancer Day, I’m proud to stand with the National Organization for Rare Disorders to raise awareness of rare - and often deadly - cancers and to keep up the fight for cures.”

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  • NORD and KrabbeConnect Launch KrabbeCURES to Study Globoid Cell Leukodystrophy

    “KrabbeCURES is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the globoid cell leukodystrophy community through shared knowledge. ”

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  • Voices of Rare Cancer: Emily’s Story

    “I consider myself lucky. I was diagnosed with VHL through genetic testing at the age of 17, and was spared the horror of having to discover that I had VHL only after it had caused some catastrophic complication such as blindness, metastatic cancer, or spinal cord damage.”

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  • Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect

    “As a mother, I had to rise to the occasion when my son was diagnosed, but it worked out for the better to form a vision and work toward that goal.  ”

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