Living with Noonan Syndrome: Parents’ experiences of caring for a child with a rare genetic condition

In the following pages, we share the lived experiences of eighteen parents who are caring for children diagnosed with NS. We aim to equip health professionals, advocates, charities, teachers and policy makers with a better understanding of the challenges these family’s face so they may be addressed more effectively. We end with recommendations for how we can work together to cultivate inclusive communities and accessible spaces that foster a sense of value and belonging, empowering families with NS to live well.