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Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

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Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

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Hear from and learn from fellow parents and clinicians in videos, guides and blog posts.

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Out-of-home placement for our medically complex child gave us more time for our other child.

Out-of-home placement for our medically complex child gave us more time for our other child.

Considering options for out-of-home placement: Finding the right fit

Considering options for out-of-home placement: Finding the right fit

Parenting a medically complex child, and identity: On becoming a social worker.

Parenting a medically complex child, and identity: On becoming a social worker.

“Where I got support varied depending on the time and situation”

“Where I got support varied depending on the time and situation”

Reflections of a Pediatric Palliative Care NP

Reflections of a Pediatric Palliative Care NP

20 Years

Feeding Tube

VIDEO COLLECTION

Tracheostomy

VIDEO COLLECTION

Clinical Trials: We really felt like we had the golden ticket. (CLN2/Batten)

Clinical Trials: We really felt like we had the golden ticket. (CLN2/Batten)

Clinical Trials: Our son and family’s road to the trial. No man’s land. (CLN2 / Batten)

Clinical Trials: Our son and family’s road to the trial. No man’s land. (CLN2 / Batten)

Clinical Trials: Our son is on the cutting edge. He IS the data. (CLN2 / Batten)

Clinical Trials: Our son is on the cutting edge. He IS the data. (CLN2 / Batten)

With the diagnosis comes the need to DO SOMETHING! (CLN2 / Batten)

With the diagnosis comes the need to DO SOMETHING! (CLN2 / Batten)

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