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    Tag Archives for: "pediatric rare disease"
    Home » pediatric rare disease
     Navigating Parenthood When Your Child Has a Rare Genetic Disease
    1
    By RoxanneDoche
    In Blog, Featured
    Posted August 30, 2019

    Navigating Parenthood When Your Child Has a Rare Genetic Disease

    What I had envisioned to be a relaxing soak after a really hard week, turned into a sob-fest. The ten minutes of peace, alone in my tub, was the only solo time I had to myself; the only time I [...]

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     My Son Was Born With Tuberous Sclerosis – Now What?
    0
    By RoxanneDoche
    In Featured, Grace
    Posted July 18, 2019

    My Son Was Born With Tuberous Sclerosis – Now What?

    Next week marks four years from when I first shared my son’s diagnosis with the world. As we approach this milestone, the emotion I felt around this time weighs on me. Remembering the [...]

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