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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 >


  • #NORDintheNews: NORD Featured in Syndicated Article on Parents’ Intuition and Rare Disease

    “Parents usually know their child better than anyone, and if a parent suspects something is wrong, it probably is. That was the case for Dan and Laura Wallenberg from Columbus, Ohio. EV Wallenberg was just 5 months old when they noticed that their daughter wasn't eating normally.”

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  • Rare Caregivers Corner: Q&A with Stephanie

    “I took a week away to have some mommy time.”

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  • NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

    “At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges. ”

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  • Reflections of a First Time NORD Summit Attendee: Matthew’s Story

    “In the end, I leave the NORD 2019 Summit and move into the following days and weeks decidedly not in the same manner that I entered: understanding that The Time Is Now.”

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