To Top

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 Caregivers Corner: Q&A with Stephanie

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

    Read more >

  • 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. ”

    Read more >

  • 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.”

    Read more >

  • Rare Caregivers Corner: Cathy’s Respite Story

    “Family offers to help but it was SO important for me to have someone who knew how to handle any medical situation that might arise while we were gone.”

    Read more >