CHARGE association looking at the future — the voice of a family support group

Summary CHARGE association is a non‐random collection of congenital anomalies. The condition is becoming more widely known to medical and educational professionals. The number of children diagnosed is increasing, probably because of the greater awareness of this condition. This paper considers some of the long‐term management problems which are often deferred in the early months, when acute life threatening problems take priority. Questionnaires were sent to parents via the CHARGE Association Family Support Group, UK. Thirty‐nine were returned and incomplete information was sought by personal contact or telephone. The majority of children were known professionally to one or both authors and information was therefore checked from medical and educational notes. There is still widespread misunderstanding about the impact of multiple disability, especially when this includes multi‐sensory impairment, on the early development of the child. Therefore, the information collected from the study has been from an educational and medical perspective, thereby aiding the understanding of these complex problems. At the parents request, information was gathered about certain teratogens, of which Lindane, an organophosphate, is highlighted.