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    Archives

    Monthly Archive for: "February, 2021"
    0
    By Rosanne Smyle
    In Blog
    Posted February 25, 2021

    Which States Have Rare Disease Advisory Councils?

    15 states with an established Rare Disease Advisory Council: Alabama, Kentucky, Illinois, Massachusetts, Minnesota, Missouri, Nevada, New Hampshire, New York, North Carolina, Ohio, Pennsylvania, [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted February 25, 2021

    Working to Create Rare Disease Advisory Councils in all 50 States

    Fifteen states done, 35 to go. Fifteen states have established a Rare Disease Advisory Council (RDAC) to give the rare disease community, including those living with Leber congenital amaurosis [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted February 2, 2021

    ‘Let’s Chat About …’ Webinar Offers LCA Overview and Updates on Clinical Trials

    In the debut of Sofia Sees Hope’s ‘Let’s Chat About …’ monthly webinar series, Ben Shaberman of the Foundation Fighting Blindness, provided his Zoom audience with a plethora of information [...]

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