In our interviews with family support groups, we’ve learned that preparation means different things for different conditions and different families. We’re presenting some of our early findings this week at the American Society for Bioethics and Humanities 2021 conference.
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
Parents and families of children with Down syndrome have a wealth of education and support to draw on. National groups and initiatives have made many resources available for free, either online or by phone or mail. … More Down syndrome support
The PREPARE Study 