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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 >


  • Featured Student: Jennifer Shoskes

    “In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community”

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  • NORD Creates Rare Disease Patient & Caregiver Resource Center

    “The Patient and Caregiver Resource Center is a one- stop shop to many of the helpful resources we provide to the 30 million people with rare diseases and their families.”

    Read more >

  • 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 >