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    The Zebra and the Bear: How a Mother’s Fierce Determination to Save Her Daughter May Lead to a Promising Gene Therapy Clinical Trial

    I was introduced to Amber Olsen, the “mama bear” in my new documentary film, The Zebra and the Bear, in the spring of 2016. A mutual friend asked if I…

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    The Things We Don’t Know

    Editor's Note: We're honored to share this patient story-share by Jess Ippolito, originally published by our friends at Stork Genetics. To see the article in its original format, please click…

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    “The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s Lymphoma

    Editor's Note: Patient Worthy is proud to share this story from our friends at Elephants & Tea. To see the story in its original format, please click here. “Well, good…

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    Laura’s Battle Against Rickets

      Editor's Note: Patient Worthy is proud to share this story from GACI Global, originally published by the Italian Osservatorio Malattie Rare (OMaR). ARHR2 – Autosomal Recessive Hypophosphatemic Rickets Type…

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    The Unspoken Guilt of Living

    Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the article in its original form, please click here. Original author…

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    What Is CRISPR?

    Editor's Note: Patient Worthy is proud to share this article from our friends at the TESS Research Foundation. To see the article in its original format, please click here. TL;DR: CRISPR…

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