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#28: The Dark Night of Uncertainty

July 29, 2015

This week, genetics. The mystery of Tess. Are we ready to give up?  

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Tags genetics, Seth Mnookin, Matt Might, Matt Wilsey, rare disease, orphan disease, Manton Center for Orphan Disease Research
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#19: Label My Kid Please

May 27, 2015

On this week's show, labels. Why we want one for Tess. Why, without a label for her, it's much harder to make plans for education and services. And why it seems like we might never get one. 

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Tags global developmental delay, diagnosis, genome mapping, undiagnosed syndrome, orphan disease, Manton Center for Orphan Disease Research, syndromes without a name, hip dysplasia
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Start at the beginning.

I've been writing about Tess since February 2014.

If you want to read more about my life with Tess, head over to my personal blog, bobigelow.com, and start with the first post.


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