'It would be much easier if we were just quiet and disappeared': Parents silenced in the experience of caring for children with rare diseases.
Genevieve CurrieJoanna SzaboPublished in: Health expectations : an international journal of public participation in health care and health policy (2019)
An understanding of parents' experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services.