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  • Minnesota Rare Disease Advisory Council (RDAC) Meeting

    Advisory Council Meetings The Minnesota RDAC meets virtually, and you can find additional meeting information linked below. Meetings How to Make a Public Comments during Full Council Meetings The Minnesota Rare Disease Advisory Council values feedback from their community. They dedicate a public comment period during each quarterly full council meeting for members of the […]

    New Hampshire Rare Disease Advisory Council (RDAC) Meeting

    Advisory Council Meetings The Council holds public meetings on the first Friday of each month from January through June, from 10:00 a.m. to 11:00 a.m. Meetings typically take place at 29 Hazen Drive, Concord, New Hampshire; however, the meeting location is subject to change. An online attendance option is also available and may be accessed […]

    Webinar: Effective Lawmaker Engagement for Rare Disease Advocates

    Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be one of the most valuable opportunities to establish meaningful, lasting relationships with elected officials and their staff. During this webinar, we’ll teach […]

  • Students for Rare New Chapter Info Session – July

    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 July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there! Register Here

    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

    Hoops for Hunter Syndrome

    Shoot Hoops. Raise Hope. Change Lives. Join Project Alive on July 19 for Hoops for Hunter Syndrome, a fun-filled basketball event benefiting Project Alive and the Hunter syndrome community! Date: July 19, 2026 Time: 9:00 AM – 12:00 PM Location: Ranch Sports Facility This special event was inspired by a family's love for basketball and their […]

    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 […]