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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 […]

    • 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 […]