We’re still here!

It’s been nearly a year since our last blog post, and what a year! At this time last year, hospitals and clinics were just beginning to get a handle on the overwhelming challenges of the COVID-19 pandemic. We didn’t attempt to recruit families during those early months. One thing we did instead: adjust our study … More We’re still here!

Diagnosis begins a journey

A new post on The DNA Exchange observes that, while a genetic diagnosis may seem like the end of a journey for a clinician, it’s really the beginning of a lifelong journey for individuals and families. And, even more importantly, that journey isn’t entirely defined by clinical diagnoses or encounters. … More Diagnosis begins a journey