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 >


  • NORD Posts New Addition to Video Library – Pediatric Movement Disorders: Guidance for Parents & Physicians

    “The video features Mered Parnes, MD, Director of the Pediatric Movement Disorders Clinic at Texas Children’s Hospital in an interview he conducted recently with staff from NORD’s Educational Initiatives Department.”

    Read more >

  • Information on current NATPARA® shortage

    “NORD has reached out to the Food and Drug Administration (FDA) on behalf of patients who are now not able to access the drug. We have asked FDA to continue working with Takeda to resolve this quality issue as quickly as possible.”

    Read more >

  • A Joint Op-Ed from NORD and Friends of Cancer Research: Despite Criticism, FDA is Doing What is Right By Rare Cancer Patients

    “The National Organization for Rare Disorders and Friends of Cancer Research have supported legislative efforts to ensure that patients have access to therapies that meet the same rigorous FDA standards as therapies for serious non-rare conditions.”

    Read more >

  • NORD Patient Assistance Program for 2020

    “Programs will be opening on a rolling basis, please look for communications in your email and mail in this month and coming months.”

    Read more >