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    • About
      • Our Story
      • Our Vision/Mission
      • Our Team
      • Pressroom
    • For Families
      • What is LCA?
      • ‘Let’s Chat About…’
      • ID Your Gene
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    Archives

    Monthly Archive for: "May, 2023"
    0
    By Rosanne Smyle
    In Blog
    Posted May 19, 2023

    From Uncertainty to Understanding for Family of 4-year-old Living with LCA1 GUCY2D

    Desirae Potts breaks into tears when she recalls the first time a doctor said her infant son James had a disease she’d never heard of – Leber congenital amaurosis, known […]

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    0
    By Courtney Coates
    In News
    Posted May 18, 2023

    Hope in Focus to Host Screening of A Shot in the Dark and Talkback with Blind Athlete Anthony Ferraro

    Hope in Focus will host a fundraising event called A Rare Opportunity on June 4, 2023, at United Theatre in Westerly. Included will be a viewing of the award-winning film […]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 2, 2023

    Connecticut Residents Living with Rare Diseases Voice Concerns to State Lawmakers

    One woman called doctor after doctor, only to hear they would not treat her and her two rare pediatric conditions because she turned 18 and no longer qualified for help. […]

    READ MORE
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