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Rare Disease Day 2022 Policy Alert MedicAlert RDACs

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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 >


  • Rare Disease Day: Kira’s Story

    “Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Kira’s journey with a Tatton-Brown Rahman Syndrome (TBRS) diagnosis. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s website.”

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  • NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

    “RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations”

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  • NORD Gives Back: Working, Aging or Living with a Rare Disease

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  • NORD Gives Back: The Future of Rare

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