To Top

Tools and Resources

Search NORD’s Database for reports on more than 1,200 diseases. Search database >

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 >

NORD raises awareness of rare diseases among physicians, clinicians and other medical professionals. View guides >

The international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >


  • NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

    “The goal of this video is to address the questions, hopes and concerns that patients and caregivers, across many different diseases, have about gene therapy. ”

    Read more >

  • NORD Responds to the Administration’s “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”

    “While we applaud the Administration for tackling this very difficult issue, we once again ask them to ensure lowering costs for patients while maintaining medical innovation remains at the very core of their initiative.”

    Read more >

  • FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker

    “Don't miss this opportunity to hear from experts and join the conversation about the new era of patient-focused innovation.”

    Read more >

  • Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy

    “The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet challenging vision: to find a cure for Myotubular Myopathy (MTM)”

    Read more >