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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Clinical Trial: Emotions

Clinical Trials: Survivor’s guilt and my place in the community.

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Clinical Trials: Survivor’s guilt and my place in the community.

Clinical Trials: Survivor’s guilt and my place in the community.

In this video, a mom talks about gene therapy as a “one and done” treatment and acknowledges the limitations – once treated her child would develop the antibodies to the vector and re-dosing would not be an option. With two children being screened for gene therapy, she talks about the logistics of keeping the children separated once the first child had been treated.

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