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RDD 2021

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Barriers to Rare Disease

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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 Partners with Frontline Medical Communications on Publications for Medical Professionals in Oncology and Rheumatology

    “The two special issues are the latest in a series of publications on which NORD and FMC collaborate to promote awareness of rare diseases, current research and state-of-the-art treatments among physicians and other medical professionals.”

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  • The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

    “This is a major win for rare disease patients and their families that will help protect them from unexpected medical bills. The provisions to end surprise medical billing were included in bipartisan legislation providing additional COVID-19 relief and to fund the federal government through September 30, 2021. ”

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  • STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

    “Social distancing and mask-wearing are nothing new for people with rare diseases that raise their risk of deadly infections.”

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  • NORD Students for Rare Member Provides Her Perspective on “Unlocking the Power of Health Care Data” Summit Panel

    “As a pre-health student, I was fascinated to hear about the ways health care is becoming digitized and how experts predict that technology will continue to become further integrated into health care in the coming years. ”

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