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      • Our Story
      • Our Vision/Mission
      • Our Team
      • Pressroom
    • For Families
      • What is LCA?
      • ID Your Gene
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      • Resources
      • Rare Retinal Disease Glossary
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      • Sofia Sees Hope Ambassadors
    • Stories
      • Posts & Videos
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    • Get Involved
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      • LCA Family Conference
      • Event Calendar
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    Archives

    Monthly Archive for: "January, 2019"
    0
    By Eissa Bass
    In News
    Posted January 31, 2019

    Sofia Sees Hope Gives $100K For Research and Genetic Testing for Inherited Retinal Disease Patients

    A $100,000 donation from Sofia Sees Hope will support research into restoring vision for patients diagnosed with Leber congenital amaurosis (LCA). The grant will also provide access to genetic [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted January 21, 2019

    The Role of the Patient Voice in Rare Disease Advocacy

    It’s you. It’s all about you. The journey from identifying a rare disease, to conducting studies, to approving a treatment, is long – but it always starts with the patient, and the information [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted January 1, 2019

    After Treatment with LUXTURNA, It’s a New Year, New Vision

    Two little girls – one on the East Coast and one on the West Coast – ring in this New Year with something they’ve never had before – their vision. Eight-year-old Hannah Reif of Maple Glen, PA, [...]

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