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 >


  • Recap: NIH NCATS Day – Partnering with Patients for Smarter Science at the NIH

    “As a rare disease patient myself, I was impressed with NCATS effort, to seek the patient community’s viewpoint.”

    Read more >

  • NORD Issues Statement in Response to the Signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017

    “This law makes it possible for FDA to continue to review orphan drugs, biologics, and medical devices expertly, quickly, and safely. ”

    Read more >

  • Protecting Your Healthcare Coverage

    “Update (August 16) NORD sends letter to Hill outlining short-term stabilization proposals to improve the Affordable Care Act.”

    Read more >

  • Advance the Dialogue at the NORD Rare Summit

    “A message from President and CEO of NORD, Peter L. Saltonstall”

    Read more >