Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball.
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#300: Chicago, in Your Living Room
We shoulda been in the Windy City this week. And we weren't. But we did go to a place that made a difference and moved the needle.
Read More#249: Getting on the Map Pt 2
The map turns out to be the key to everything we're doing right now. I'm talking about the rare-disease map. We want to get on it. And it is slowly beginning to happen.
Read More#245: Back to Global Genes
In 2015, I was just starting out. Fresh out of the long, winding, painful chute of diagnosis with our T-Bird. What a difference 1460 days make.
Read More#117: We Belong
We've been waiting for almost Tess's entire life to meet someone like her. To meet a family like ours. And it finally happened.
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