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    • Becoming Your Own Best Advocate: Practical Skills for Navigating the Rare and Undiagnosed Journey

    Navigating a rare or undiagnosed condition can feel overwhelming, from preparing for medical appointments and communicating with providers to finding reliable information, resources, and support. Join us for a practical conversation designed to help patients and families feel more confident, informed, and prepared throughout their journey. Hear from Christine McGarvey, an undiagnosed patient and NORD’s […]

    Webinar: Make an Impact with Your State’s Rare Disease Advisory Council

    Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar, we’ll teach you how RDACs operate, and the different ways that advocates can advance and strengthen the work of a council. […]

    NORD Volunteer Information Session

    NORD Volunteer Meeting

    In this session, NORD staff will provide an overview of NORD's volunteer programming. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion, providing a space for you to ask questions and determine the next steps for […]

    • Join NORD’s Running for Rare Cheer Squad for the 2026 TCS NYC Marathon

    Make a difference and join NORD’s Running for Rare Cheer Squad at the 2026 TCS New York City Marathon! Join NORD’s Running for Rare Cheer Squad and help bring energy, encouragement, and support to runners along the course. Your presence will help motivate NORD’s team and show the rare disease community that they are surrounded […]

    Maryland Rare Disease Advisory Council (RDAC) Meeting

    Advisory Council Meetings The Maryland Rare Disease Advisory Council meets monthly on the second Tuesday of the month from 4-5PM. You can find additional meeting time information linked below. Meetings

    Illinois Rare Disease Commission Meeting

    Commission Meetings The Illinois Rare Disease Commission meets monthly, and you can find additional meeting information below. Meetings

    Virginia Rare Disease Council Meeting

    Advisory Council Meetings The Virginia Rare Disease Council meets quarterly. You can search for Virginia Rare Disease Council meetings on the Virginia Regulatory Town Hall website. To do so, simply click "Regulatory Board" and select "State Board of Health". Then click "Scheduled For" and select "All Past and Future". Finally, under "Meeting Title Partial Match" […]