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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 >

News

  • Rare Disease Day: Elizabeth’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 Elizabeth’s journey with SUOX mutation/late onset isolated sulfite oxidase deficiency. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s website. ”

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  • NORD Gives Back: Rare Disease & Family Life

    “Being a family member or friend of someone with a rare disease can be a challenging experience. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope and share experiences for those affected by rare diseases and their families. ”

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  • 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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