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    • About
      • Our Story
      • Our Vision/Mission
      • Our Team
      • Pressroom
    • For Families
      • What is LCA?
      • ID Your Gene
      • Clinical Trials
      • Resources
      • Rare Retinal Disease Glossary
      • Family Connections
      • Sofia Sees Hope Ambassadors
      • Let’s Chat About…
    • Stories
      • Posts & Videos
      • Photo Gallery
    • Get Involved
      • Dinner in the Dark
      • LCA Family Conference
      • Event Calendar
      • Donate
    • Contact
      • Get in Touch
      • Newsletter Sign Up
      • Family Connections
    • DONATE

    Archives

    Monthly Archive for: "June, 2019"
    0
    By Rosanne Smyle
    In Blog
    Posted June 20, 2019

    LCA Families Finding Strength with Each Other

    Heather Le’s anxiety accompanying her daughter’s diagnosis of Leber congenital amaurosis melted into relief when she connected with a mom whose daughter was also born with LCA. And this mom – [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted June 20, 2019

    Diagnosis to Treatment: Pioneering LCA Patient Eases the Journey

    As a global advocacy organization dedicated to helping those affected by blindness caused by rare inherited retinal disease, Sofia Sees Hope connects families with Leber congenital amaurosis [...]

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    0
    By Eissa Bass
    In News
    Posted June 11, 2019

    Sofia Sees Hope Co-founder Named Foundation Fighting Blindness National Trustee

    Ledyard, CT (June 11, 2019) — Laura Manfre of Ledyard, CT, a co-founder of Sofia Sees Hope, has been named a National Trustee by the Foundation Fighting Blindness. Sofia Sees Hope is a 501(c)(3) [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted June 10, 2019

    The Patient Voice: A Critical Piece of the Rare Disease Advocacy Puzzle

    Two people deeply involved in patient advocacy and public policy recently urged members of the rare disease community to use their personal experiences as a means of advocating for research and [...]

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