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 >


  • Updated Study Analyzes Use and Cost of Orphan Drugs

    “Median annual cost for top 10 rare disease therapies is less than $10,000 per year.”

    Read more >

  • Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs

    “As Open Enrollment Begins, Beneficiaries who Rely on Copay Coupons Must Consider this New Policy When Selecting a Health Plan”

    Read more >

  • NORD IAMRARE HI Global Registry Launched

    “Patient-Powered Research for a Brighter Future”

    Read more >

  • NORD Seeks Proposals for CME Partnership

    “The goals of this program will be to address universal issues related to rare diseases, such as delayed diagnosis, as well as topics related to specific rare diseases or groups of diseases.”

    Read more >