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.
TO PARENTS OF THE UNDIAGNOSED OR OTHERWISE UNDERCONNECTED:
SWAN (Syndromes Without a Name) UK on FB (closed group, but you can ask to join),
Manton Center for Orphan Disease Research, Boston, MA
If you know someone with a great idea and their own startup, message me on Facebook or email me at bo [DOT] bigelow [AT] gmail [DOT] com.