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  • Webinar: State Legislative Session Recap

    As state legislative sessions wind down, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar, we’ll discuss bills we tracked across the country, celebrate our hard-fought advocacy wins, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we […]

    Webinar: Overcoming Insurance Barriers

    If you are impacted by a rare disease, you are likely spending countless hours navigating health insurance. In this session, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you […]

    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 […]

  • 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 select "State Board of Health" as the "Regulatory Board" and "All Past and Future" under "Scheduled For". Finally, enter "Rare Disease" in the "Meeting Title […]

    Students for Rare New Chapter Info Session – August

    Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our August session will take place on August 10 at 12:00 p.m. ET. We look forward to seeing you there! Register Here

    Webinar: Understanding Medical Nutrition and Insurance Coverage Challenges

    For many rare disease patients, medical nutrition products are life-sustaining medicine, yet insurance coverage for medical nutrition is inconsistent and varies widely based on a patient's diagnosis, insurance plan type, and state of residence. During this webinar, we'll teach you about the meaning of "medically necessary nutrition products", how medical nutrition coverage challenges impact the […]

    Webinar: Innovative Approaches to Improving Your Rare Disease Care

    In an era of scientific and technological advances, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey. Register