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EOY Campaign 2020

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RIA 2020 Virtual

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Telehealth

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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 >

News

  • NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

    “88% of rare patients offered a telehealth appointment during COVID-19 accepted it, 92% of whom said it was a positive experience”

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  • NORD mentioned, RareInsights fact sheet featured in Psychology Today article

    “A new article on PsychologyToday.com, “People with Rare Diseases Need Better Social Support,” examines a new study that shows which types of support most benefit those with rare diseases.”

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  • NORD and C-Path Release New Video, “RDCA-DAP: Shortening the Timeline for Developing New Treatments for Rare Diseases”

    “Final installment in video series highlights the ways RDCA-DAP can help to streamline and speed the journey to rare disease cures and treatments throughout the five stages of the drug development process.”

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  • Quality of Life and Butterfly Wishes

    “The Eva Juneja Foundation has provided a generous grant to enable NORD to provide eligible WWS diagnosed children an experience designed specifically for the child, to enhance his/her quality of life (a butterfly wish).  ”

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