We’ve published our first results!

We’re thrilled that the first results from the PREPARE study have now been published in the Journal of Community Genetics! This article draws on our interviews with family support groups, and reports on their priorities when communicating with families who’ve recently received a genetic diagnosis, their limitations (especially related to limited funding), and ultimately their … More We’ve published our first results!

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