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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 >


  • NORD Joins Coalition Representing Millions of Patients to Release Telehealth Principles

    “A coalition of organizations representing millions of patients who live with serious, acute, and chronic conditions has released principles to guide policymakers seeking to ensure patients can continue to safely access appropriate telehealth services during and after the COVID-19 public health emergency. ”

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  • Head of the Herd: Susan Thornton, CEO, Cutaneous Lymphoma Foundation

    “In addition to being the current CEO of the Cutaneous Lymphoma Foundation, I’m also a patient. I’ve been living with cutaneous lymphoma for close to 30 years, so I have intimate knowledge of what it’s like to live with a rare, incurable disease that requires treatment.”

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  • NORD and C-Path Release Video on Rare Disease Challenges in Each Step of the Drug Development Process

    “Watch the second installment in NORD and C-Path's three-part video series on accelerating rare disease drug development, which examines the unique challenges of developing therapies for rare diseases in each step of the drug development process.”

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  • 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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