To Top

Summit 2021 Virtual

More Info >

Newborn Screening

More Info >


More Info >

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 >


  • A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

    “Shayna's story is meant to give some direction to patients and families who have been newly diagnosed and the importance of advocating and casting a wide net for options”

    Read more >

  • Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program

    “C-Path, NORD and FDA host annual meeting, demonstration and launch of new rare disease data and analytics platform. ”

    Read more >

  • NORD Statement on Proposed Changes to the Orphan Drug Tax Credit

    “NORD CEO Peter Saltonstall issues a statement on the proposed amendment the Orphan Drug Tax Credit (ODTC)”

    Read more >

  • Sharing Makayla’s Voice for Rare Cancer Day

    “Makayla's story is about the over a decade she has spent fighting GIST and joining together with the community to uplift the voices of rare patients”

    Read more >