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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 >


  • Last Rare Disease Day Event of 2018 a Success in Pennsylania

    “Dozens of advocates joined in the Capitol this morning to support PA National Rare Disease Day and the more than 1.2 million people in Pennsylvania who are affected by a rare disease.”

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  • NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients

    “We thank Secretary Azar for the opportunity to discuss the needs of America’s 30 million rare disease patients.”

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  • NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans

    “In order to raise awareness of these programs and the harm they will cause to many in the rare disease community, NORD has created a short explanation of the issue for patients and their families.”

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  • A Celebration of NORD’s 35th Anniversary

    “The evening showcased the remarkable stories of those creating a brighter future for every person affected by a rare disease. Their stories and achievements are truly inspirational.”

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