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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 >


  • Giving Back to the Community: Suzy’s Rare Journey

    “Read about Suzy's rare disease journey.”

    Read more >

  • Baby Formula Shortage Highlights Need for Congress to Act on Medical Nutrition Equity

    “The current formula shortage highlights the critical importance of formula for those who need it to meet their nutritional need”

    Read more >

  • Living Stronger: Jessica’s Rare Journey

    “Read about Jessica's journey with EDS.”

    Read more >

  • Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

    “New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases”

    Read more >