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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 […]

  • 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: […]