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    Archives

    Tag Archives for: "Leber Congenital Amaurosis"
    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 December 13, 2018

    Living with LCA: ‘It does no good to have pity’

    Mikayla Larson, a 30-year-old mother living with a rare inherited retinal disease (IRD) called Leber congenital amaurosis (LCA) wants to reassure children living with the same disease that [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted October 31, 2018

    The Road to Treatment: Understanding How Therapies Are Developed

    Successful clinical drug trials are a cornerstone of U.S. Food and Drug Administration approval, such as with LUXTURNA™, a ground-breaking genetic therapy that helps restore vision in Leber [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted September 5, 2018

    ‘As A Doctor, You Will Never Forget’

    Transforming laboratory research into real-life therapy for patients is a rare occurrence. But when it does happen, it’s big. Huge, in fact. Ask Dr. Audina M. Berrocal, the pediatric retinal […]

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    0
    By Rosanne Smyle
    In Blog
    Posted August 22, 2018

    In LCA: Naming Versus Numbering

    Gene mutations in the rare inherited retinal disease of Leber congenital amaurosis commonly are referred to by their gene name, such as GUCY2D, RPE65 and CEP290. But sometimes, as LCA patients [...]

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    0
    By Sofia Sees Hope
    In Blog
    Posted July 17, 2018

    Tell Us Your Story: ‘Do Not Limit Yourself’

    By Angélica Bretón Morán I am 22 years old and I have LCA. My name is Angélica Bretón Morán, I am from Mexico, I am 22 years old and I […]

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    0
    By Rosanne Smyle
    In Blog
    Posted July 8, 2018

    An Amazing Year

    This is the seventh in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment in March with the breakthrough gene-therapy drug called [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 10, 2018

    Living With LCA: Maverick Johnston

    A revolutionary genetic treatment could improve the vision of 5-year-old Maverick Johnston, but his mom first wants to know more about the side effects and capabilities of the breakthrough drug [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 20, 2018

    Life After LUXTURNA: ‘Now He Can See’

    This is the sixth in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment in March with the breakthrough gene-therapy drug called LUXTURNA™, [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 13, 2018

    New Patient Services Program Helps People Navigate Their Road To A Cure

    Now that LUXTURNA™ has come to market as a revolutionary vision-restoring genetic treatment, how does it get to patients? The answer to that question and many others can be found within […]

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