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    • About
      • Our Story
      • Our Vision/Mission
      • Our Team
      • Pressroom
    • For Families
      • What is LCA?
      • ID Your Gene
      • Clinical Trials
      • Resources
      • Family Connections
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    • Get Involved
      • Dinner in the Dark
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    Archives

    Monthly Archive for: "February, 2018"
    By Rosanne Smyle
    In Blog
    Posted February 28, 2018

    On Rare Disease Day, Shining A Light

    Lisa Kurec never heard of the National Organization for Rare Disorders (NORD) until Wednesday, but after many years of finding no answers for her son’s rare disease, she decided to attend NORD’s [...]

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    By Laura Manfre
    In Blog
    Posted February 28, 2018

    ‘We know how important it is to know your gene. We’ve lived it.’

    It took more than seven years to get a genetic diagnosis for our daughter. During that time, doctors were pretty sure she had LCA, although we also heard that maybe she had cone-rod dystrophy or [...]

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    By Rosanne Smyle
    In Blog
    Posted February 26, 2018

    Living with LCA: ‘Then All Our Dreams Were Realized’

    This is the first in a series following the progress of Hannah Reif, a 7-year-old Pennsylvania first-grader, who is a candidate for the revolutionary gene-therapy drug called LUXTURNA™, approved [...]

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    By Rosanne Smyle
    In Blog
    Posted February 19, 2018

    Curing Blindness: The Road To Treatment With LUXTURNA™

    This is the first in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who is a candidate for the breakthrough gene-therapy drug called LUXTURNA™, approved as [...]

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    By Sofia Sees Hope
    In News
    Posted February 16, 2018

    Sofia Sees Hope Launches Family Connections Program

    Sofia Sees Hope has launched a Family Connections program designed to help end the isolation that many feel when they receive a rare inherited retinal disease diagnosis. The Family Connections [...]

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    By Rosanne Smyle
    In Blog
    Posted February 13, 2018

    CT Rare Disease Day: Patients Must Be Advocates

    On Rare Disease Day – Wednesday, February 28 – doctors, researchers, advocates, patients, caregivers, industry representatives and legislators will come together in Connecticut and around the [...]

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    By Eissa Bass
    In News
    Posted February 6, 2018

    Sofia Sees Hope Donates $65K to Help Ensure Free Genetic Testing for Inherited Retinal Disease Patients

    Ledyard, CT (February 6, 2018) — Sofia Sees Hope, an organization dedicated to finding treatments and cures for blindness caused by inherited retinal diseases (IRDs), is helping to ensure that [...]

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    By Eissa Bass
    In News
    Posted February 6, 2018

    #KnowYourGene For International Rare Disease Day

    Sofia Sees Hope launches International Rare Disease Day February campaign — ‘Get Tested, Get Connected’ — to encourage those diagnosed with rare inherited retinal diseases to receive genetic [...]

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    By Rosanne Smyle
    In Blog
    Posted February 4, 2018

    #KnowYourGene: AGTC Working On Multiple IRD Treatments

    Applied Genetic Technologies Corporation (AGTC), a clinical stage biotech company that focuses on rare inherited retinal diseases (IRDs), develops therapies that replace “broken” genes with [...]

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