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EOY Campaign 2020

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RIA 2020 Watch On-Demand

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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 >


  • NORD Announces RareLaunch Workshops to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs 

    “NORD’s RareLaunch program aims to empower leaders to start much-needed rare disease nonprofits, and supports existing patient advocacy organizations in developing their capacity to engage in research. These two areas of capacity building represent pivotal stages in a rare disease community’s growth and development and therefore are the focus of December’s workshops.  ”

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  • Head of the Herd: Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

    “I think some leadership skills are part of one's personality; other skills are learned and acquired, through a combination of training, education, mentorship and on-the-job experience.”

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  • RDCA-DAP First Year Milestones Highlighted at Virtual Workshop

    “NORD, C-Path, FDA and more come together to showcase the importance of data sharing in rare disease drug development ”

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  • NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

    “88% of rare patients offered a telehealth appointment during COVID-19 accepted it, 92% of whom said it was a positive experience”

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