Consumer advisory group strengthens NurtureNextGen
NurtureNextGen is guided by a Consumer Advisory Group made up of ten parents who have direct experience supporting a child with a genetic neurodevelopmental condition. The[…]
“What does this mean for our future?”
Parents and researchers are working together to empower families navigating a genetic neurodevelopmental diagnosis with balanced and accurate information. When a paediatrician informed Elizabeth Callinan[…]
Looking to the future: exploring parental preferences for receiving prognostic information about their child’s neurodevelopmental condition
The paper Turbitt E, Bourne M, McEwen A, Amor DJ. Parents’ preferences for receiving and discussing prognostic genetic information regarding their children’s neurodevelopmental condition: A[…]
How doctors talk to parents about the future of a child with a neurodevelopmental condition: what we know to date
The paper Turbitt, E., Callinan, E., Shakes, P. et al. Fostering Hope and Acknowledging Uncertainty: Meeting Parents’ Needs and Preferences When Communicating Prognosis in Genetic[…]