Dawn
Dawn, mother of Vayle (age 16 months). Vayle has Canavan Disease.
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Clinical Trials: A mom – “I hope I get to make that decision whether to participate and that I make the right decision.”
A Canavan mom on learning gene therapy was on the horizon and getting information from the company. “Information is being shared the way it needs to be shared.”
Clinical Trials: A mom considers her risk aversion. “For me it’s more about whether this is the right thing for her.”
Clinical Trials: A Rare Disease Mom-Just Tell Me, What Do I Need to Do?????
Clinical Trials: A mom on her child participating in a natural history study
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