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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 >

News

  • Voices of Rare Cancer: Emily’s Story

    “I consider myself lucky. I was diagnosed with VHL through genetic testing at the age of 17, and was spared the horror of having to discover that I had VHL only after it had caused some catastrophic complication such as blindness, metastatic cancer, or spinal cord damage.”

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  • Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect

    “As a mother, I had to rise to the occasion when my son was diagnosed, but it worked out for the better to form a vision and work toward that goal.  ”

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  • Rare Cancer Day 2020 To Take Place on September 30

    “Spearheaded by the NORD Rare Cancer Coalition, Rare Cancer Day is observed to bring attention to the challenges patients and caregivers face, raise awareness of the need for greater research funding, early diagnosis and patient support, and unify individuals living with rare cancers.   ”

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  • A Newborn Screening Reflection: Sarah’s Story

    “September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it and why we think every parent should know more about this incredible test”

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